Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 My two cent's worth on foot pain. I have had general pain in my feet, especially the balls of my feet, since I was a teenager. (Dont want to admit it, over 40 years ago). Supposedly " good " shoes and support stockings didn't help much. Heels were/are out of the question. Then custom molded orthotics helped somewhat. I finally found the best solution for me with the metatarsal arches (forward and center of the regular arch) found in Birkenstock sandals. Additionally, the sandal/shoe has a footbed made of cork, which compresses over time to mold to feet as they are actually bearing weight in walking. These darlings have allowed me to walk with more comfort now than when I was 20. I wear em rain or shine, 24/7/365. One pair is even designated as house shoes. My hypothesis about my foot problem, which no one could ever explain, was that the muscles just didn't have the strength/endurance to do their work long enough, like in a normal person, and that the support under the metatarsal area takes some of the weight off my bones. There are some inexpensive plastic, fairly rigid arches I have bought from TV that also give me the support in the metatarsal area where I need it. Not that one size fits all, or that the same shoes will help everyone, but I do want to suggest that aggressively trying different shoes/support arches might help us with some of our pain. Additionally, it is claimed when the feet have proper arch supports, the entire body is in better alignment, again putting less stress on our other muscles/joints. A friend claims her knee problem has been greatly reduced with Birkenstocks. Just observations from a long time foot sufferer. One more thought, if you consider Birkies, know they take some getting used to, and the comfort will greatly increase over time, when you wear in the footbed to your foot. Getting them fit properly is also important, so i would not suggest buying online. Regards to all Sunny > No Dolores, you haven't lost it. I go through periods of time where > just > stepping on my right foot triggers a strong electric shock sensation > in the > ball of my foot. The first time this happened many years ago I was > vacuuming > and thought the vacuum had given me a shock. Not so. It kept > happening, and > it is stepping on the foot that triggers the shock. With every step, > shock, > shock, shock. Once it starts, the more I walk the worse it gets. If I > rest > for several hours, it will usually stop for a while. I haven't had > this as > much in recent years. I believe there is a medical term for this > event, but > have forgotten it. > Barbara > > > > > Re: spasms > > > > I have always had severe leg cramps and I have taken several types > of > muscle > > relaxers over the years. I have very severe pains in the right > side of my > head, ear, > > face and I have stabbing pains in my right eye that feels like > someone is > sticking a > > needle in my eye, I have been told that this is from trigeminial > neuralgia. My > > opthamologist spoke with my current neurologist and he increased the > dosage of > > neurotin from 300mg three times daily to 300mg four times daily > and it > has helped > > the pain in the right side of my head, ear, face and eye > considerably. At > least I do > > feel that it is livable now. At times my feet feel like (please > don't > think I've lost it) > > there is an electrical current going thru them. I do have > peripheral > neuropathy in > > both legs, but with the antodyne thereapy and the neurotin it > isn't as > bad as it was, > > for which I am very thankful. I'm not sure if this is in any way > helpful > or if it just > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > z39z@... wrote:Vivian, > > > > Blessedly mine don't last very long, or come that often, because > they > > are dreadfully painful. They seem to come when I move my foot > > sideways, or stretch it a certain way. I immediately try to massage > > it, and move the foot in the opposite directions with my hands, and > > they seem to fade quite quickly then. I have always been out of the > > company of others except my husband. I certainly would not want to > be > > seen by anyone when one hits. I also get a similar sharp pain in the > > center of my head, when I yawn a certain way. It originates from one > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I > don't > > move and just try to let my jaw go slack, it releases in a short > time. > > > > > > > > > > > > > Vivian, > > > > > > Cannot help with an answer on this but sure would like to find > one. > > > I get this every now and then also and it is awful. Lately it > has not > > > been happening at night but during the day while I am at work. I > try > > > my best to kind of stand my foot up in my shoe and press my toes > to > > > the ground. Sometimes I do take my shoes off and press my toes > to the > > > floor. > > > > > > Janet > > > spasms > > > > > > > > > what other than med's can I do for spasms in the feet and > > > toes....this will > > > happen when I am lying down in bed and move/change position. > Thanks > > > Vivian > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Hi RH, I am in the same boat as most of you. My EMG was very painful and I will NEVER have another one. The Resident who did mine thought I was a baby, and was laughing at me as the tears ran down my face. It was horrible. And he told me " It doesn't hurt " I said " If you think it doesn't hurt, Can I do it to you when we are done? " He said " I have had EMG's done. When we did rotations in Neurology, all of us used to take turns doing them on each other, so I know they don't hurt. " Well, mine hurt. :'( While the doctor was on the phone, it would have been a good time to jump off the table and run for your life. :-D Hugs, Ann-Marie At 09:55 PM 6/1/2005, you wrote: >Yes, definitely depends on the doctor. The doctor who did mine was >oblivious to the fact I was freezing (even with blankets on) and also >answered a page and took a call in the middle of the procedure. > >Take care, >RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Hi RH, I am in the same boat as most of you. My EMG was very painful and I will NEVER have another one. The Resident who did mine thought I was a baby, and was laughing at me as the tears ran down my face. It was horrible. And he told me " It doesn't hurt " I said " If you think it doesn't hurt, Can I do it to you when we are done? " He said " I have had EMG's done. When we did rotations in Neurology, all of us used to take turns doing them on each other, so I know they don't hurt. " Well, mine hurt. :'( While the doctor was on the phone, it would have been a good time to jump off the table and run for your life. :-D Hugs, Ann-Marie At 09:55 PM 6/1/2005, you wrote: >Yes, definitely depends on the doctor. The doctor who did mine was >oblivious to the fact I was freezing (even with blankets on) and also >answered a page and took a call in the middle of the procedure. > >Take care, >RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Dolores I hope you can get some help! laurie > I had one EMG in January and one later in a different area, I could really feel parts of me jumping when they pricked me. I do have peripheral neuropathy in both legs and trigemminal neuralgia in my right eye and right sice of my had and face for which I take neurotin. My current neurologist told me if at any time I have questions or concerns between appts to call, so since I know that others have this same problem I am going to give his office a call. I am very new at this game and really not sure what is symptomatic and what isn't, thanks to all that answered my post for helping clear this up for me. God Bless, Dolores > > Laurie Fitzgerald laurie.fitzgerald@...> wrote:Dolores > > I have the same kinds of sensations and my neuro said it was a form or > neuropathy - hypersensitive nerves which fire when they are suppose > to. I still have some, but they were greatly reduced when I started > taking the Lamictal for the myoclonus. > > For those who have had very painful EMGs, it depends on the doctor > doing them. I have had at least a dozen EMGs by many different people > and many different pain levels. If you are to have one, check to see > how often the doc does them and ask him/her to use pediatric needles. > I've had a sadistic doc or two and my MDA neuro who teaches EMG at two > medical schools says they can be close to painless and they are when > he does them. > > laurie > > > > I told my son about that strange sensation and he asked me if I had talked to one of my doctors and I told him " No " as I didn't care to have my PCP start shaking her head and not saying anything, just giving me that look again. I know it sure is a strange sensation, it reminds me of touching an electric fence one when I was about nine years old. Thanks for the post I feel much better knowing it isn't just me. Take care, Dolores > > > > Barbara Seaman wheatchild@...> wrote:No Dolores, you haven't lost it. I go through periods of time where just > > stepping on my right foot triggers a strong electric shock sensation in the > > ball of my foot. The first time this happened many years ago I was vacuuming > > and thought the vacuum had given me a shock. Not so. It kept happening, and > > it is stepping on the foot that triggers the shock. With every step, shock, > > shock, shock. Once it starts, the more I walk the worse it gets. If I rest > > for several hours, it will usually stop for a while. I haven't had this as > > much in recent years. I believe there is a medical term for this event, but > > have forgotten it. > > Barbara > > > > > > > > > Re: spasms > > > > > > I have always had severe leg cramps and I have taken several types of > > muscle > > > relaxers over the years. I have very severe pains in the right side of my > > head, ear, > > > face and I have stabbing pains in my right eye that feels like someone is > > sticking a > > > needle in my eye, I have been told that this is from trigeminial > > neuralgia. My > > > opthamologist spoke with my current neurologist and he increased the > > dosage of > > > neurotin from 300mg three times daily to 300mg four times daily and it > > has helped > > > the pain in the right side of my head, ear, face and eye considerably. At > > least I do > > > feel that it is livable now. At times my feet feel like (please don't > > think I've lost it) > > > there is an electrical current going thru them. I do have peripheral > > neuropathy in > > > both legs, but with the antodyne thereapy and the neurotin it isn't as > > bad as it was, > > > for which I am very thankful. I'm not sure if this is in any way helpful > > or if it just > > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > > > z39z@... wrote:Vivian, > > > > > > Blessedly mine don't last very long, or come that often, because they > > > are dreadfully painful. They seem to come when I move my foot > > > sideways, or stretch it a certain way. I immediately try to massage > > > it, and move the foot in the opposite directions with my hands, and > > > they seem to fade quite quickly then. I have always been out of the > > > company of others except my husband. I certainly would not want to be > > > seen by anyone when one hits. I also get a similar sharp pain in the > > > center of my head, when I yawn a certain way. It originates from one > > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I don't > > > move and just try to let my jaw go slack, it releases in a short time. > > > > > > > > > > > > > > > > > > > Vivian, > > > > > > > > Cannot help with an answer on this but sure would like to find one. > > > > I get this every now and then also and it is awful. Lately it has not > > > > been happening at night but during the day while I am at work. I try > > > > my best to kind of stand my foot up in my shoe and press my toes to > > > > the ground. Sometimes I do take my shoes off and press my toes to the > > > > floor. > > > > > > > > Janet > > > > spasms > > > > > > > > > > > > what other than med's can I do for spasms in the feet and > > > > toes....this will > > > > happen when I am lying down in bed and move/change position. Thanks > > > > Vivian > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Dolores I hope you can get some help! laurie > I had one EMG in January and one later in a different area, I could really feel parts of me jumping when they pricked me. I do have peripheral neuropathy in both legs and trigemminal neuralgia in my right eye and right sice of my had and face for which I take neurotin. My current neurologist told me if at any time I have questions or concerns between appts to call, so since I know that others have this same problem I am going to give his office a call. I am very new at this game and really not sure what is symptomatic and what isn't, thanks to all that answered my post for helping clear this up for me. God Bless, Dolores > > Laurie Fitzgerald laurie.fitzgerald@...> wrote:Dolores > > I have the same kinds of sensations and my neuro said it was a form or > neuropathy - hypersensitive nerves which fire when they are suppose > to. I still have some, but they were greatly reduced when I started > taking the Lamictal for the myoclonus. > > For those who have had very painful EMGs, it depends on the doctor > doing them. I have had at least a dozen EMGs by many different people > and many different pain levels. If you are to have one, check to see > how often the doc does them and ask him/her to use pediatric needles. > I've had a sadistic doc or two and my MDA neuro who teaches EMG at two > medical schools says they can be close to painless and they are when > he does them. > > laurie > > > > I told my son about that strange sensation and he asked me if I had talked to one of my doctors and I told him " No " as I didn't care to have my PCP start shaking her head and not saying anything, just giving me that look again. I know it sure is a strange sensation, it reminds me of touching an electric fence one when I was about nine years old. Thanks for the post I feel much better knowing it isn't just me. Take care, Dolores > > > > Barbara Seaman wheatchild@...> wrote:No Dolores, you haven't lost it. I go through periods of time where just > > stepping on my right foot triggers a strong electric shock sensation in the > > ball of my foot. The first time this happened many years ago I was vacuuming > > and thought the vacuum had given me a shock. Not so. It kept happening, and > > it is stepping on the foot that triggers the shock. With every step, shock, > > shock, shock. Once it starts, the more I walk the worse it gets. If I rest > > for several hours, it will usually stop for a while. I haven't had this as > > much in recent years. I believe there is a medical term for this event, but > > have forgotten it. > > Barbara > > > > > > > > > Re: spasms > > > > > > I have always had severe leg cramps and I have taken several types of > > muscle > > > relaxers over the years. I have very severe pains in the right side of my > > head, ear, > > > face and I have stabbing pains in my right eye that feels like someone is > > sticking a > > > needle in my eye, I have been told that this is from trigeminial > > neuralgia. My > > > opthamologist spoke with my current neurologist and he increased the > > dosage of > > > neurotin from 300mg three times daily to 300mg four times daily and it > > has helped > > > the pain in the right side of my head, ear, face and eye considerably. At > > least I do > > > feel that it is livable now. At times my feet feel like (please don't > > think I've lost it) > > > there is an electrical current going thru them. I do have peripheral > > neuropathy in > > > both legs, but with the antodyne thereapy and the neurotin it isn't as > > bad as it was, > > > for which I am very thankful. I'm not sure if this is in any way helpful > > or if it just > > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > > > z39z@... wrote:Vivian, > > > > > > Blessedly mine don't last very long, or come that often, because they > > > are dreadfully painful. They seem to come when I move my foot > > > sideways, or stretch it a certain way. I immediately try to massage > > > it, and move the foot in the opposite directions with my hands, and > > > they seem to fade quite quickly then. I have always been out of the > > > company of others except my husband. I certainly would not want to be > > > seen by anyone when one hits. I also get a similar sharp pain in the > > > center of my head, when I yawn a certain way. It originates from one > > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I don't > > > move and just try to let my jaw go slack, it releases in a short time. > > > > > > > > > > > > > > > > > > > Vivian, > > > > > > > > Cannot help with an answer on this but sure would like to find one. > > > > I get this every now and then also and it is awful. Lately it has not > > > > been happening at night but during the day while I am at work. I try > > > > my best to kind of stand my foot up in my shoe and press my toes to > > > > the ground. Sometimes I do take my shoes off and press my toes to the > > > > floor. > > > > > > > > Janet > > > > spasms > > > > > > > > > > > > what other than med's can I do for spasms in the feet and > > > > toes....this will > > > > happen when I am lying down in bed and move/change position. Thanks > > > > Vivian > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Yes, LOL, I should have left. Considering I've had three kids without epidurals, I'd say I have a very high pain tolerance, so the pain of the EMG threw me for a loop. When I had my single-fiber EMG, it was a different story. It was painful, but the doctor was very concerned about my pain level, and adjusted it accordingly, and also told me that topical anesthetic was available for after the test. Just knowing he cared whether it hurt was important. Take care, RH > >Yes, definitely depends on the doctor. The doctor who did mine was > >oblivious to the fact I was freezing (even with blankets on) and also > >answered a page and took a call in the middle of the procedure. > > > >Take care, > >RH > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Go Birkies! For sure Birkies are big in this university/hippie town. (More hippies here than in California, my San Diego son says.) I have friends who wear them year round, with wool socks in winter, shoveling snow. Unfortunately, Birkies and I are not compatible for a couple of reasons. My feet, in fact, have never been shoe-friendly. I developed huge bunions at age 6 with fallen metatarsals and overlapping crooked toes. Imagine a bad set of teeth and you'll get the picture. I wore custom arch supports in my shoes throughout childhood but my feet still hurt all day every day. Thus shoes in general I have associated with pain and have always gone barefoot whenever possible, which is 24/7 now. In winter I wear layers of polartec socks. At this point shoes create another problem. My feet have a marked drag; they scoot along and don't lift. In this mode, shoe soles of any sort tend to catch on carpet or tile and send me pitching forward dangerously. And when I try to lift my feet, balance goes totally kaput. I buy the lightest weight shoes I can find to wear when I go out. Anything big and chunky (and in style) and my legs quit entirely. Usually I go out in a chair, but I like to walk around a little, even if I arrive sitting......remnants of silly pride, I guess. Cheers! B > Re: spasms > > > > > > I have always had severe leg cramps and I have taken several types > > of > > muscle > > > relaxers over the years. I have very severe pains in the right > > side of my > > head, ear, > > > face and I have stabbing pains in my right eye that feels like > > someone is > > sticking a > > > needle in my eye, I have been told that this is from trigeminial > > neuralgia. My > > > opthamologist spoke with my current neurologist and he increased the > > dosage of > > > neurotin from 300mg three times daily to 300mg four times daily > > and it > > has helped > > > the pain in the right side of my head, ear, face and eye > > considerably. At > > least I do > > > feel that it is livable now. At times my feet feel like (please > > don't > > think I've lost it) > > > there is an electrical current going thru them. I do have > > peripheral > > neuropathy in > > > both legs, but with the antodyne thereapy and the neurotin it > > isn't as > > bad as it was, > > > for which I am very thankful. I'm not sure if this is in any way > > helpful > > or if it just > > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > > > z39z@... wrote:Vivian, > > > > > > Blessedly mine don't last very long, or come that often, because > > they > > > are dreadfully painful. They seem to come when I move my foot > > > sideways, or stretch it a certain way. I immediately try to massage > > > it, and move the foot in the opposite directions with my hands, and > > > they seem to fade quite quickly then. I have always been out of the > > > company of others except my husband. I certainly would not want to > > be > > > seen by anyone when one hits. I also get a similar sharp pain in the > > > center of my head, when I yawn a certain way. It originates from one > > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I > > don't > > > move and just try to let my jaw go slack, it releases in a short > > time. > > > > > > > > > > > > > > > > > > > Vivian, > > > > > > > > Cannot help with an answer on this but sure would like to find > > one. > > > > I get this every now and then also and it is awful. Lately it > > has not > > > > been happening at night but during the day while I am at work. I > > try > > > > my best to kind of stand my foot up in my shoe and press my toes > > to > > > > the ground. Sometimes I do take my shoes off and press my toes > > to the > > > > floor. > > > > > > > > Janet > > > > spasms > > > > > > > > > > > > what other than med's can I do for spasms in the feet and > > > > toes....this will > > > > happen when I am lying down in bed and move/change position. > > Thanks > > > > Vivian > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Hi all, Topical anesthetic, my tech (whatever) was a sadist! More info. I need in case I ever am pressured to take the test again. They will have hell to pay with me if they try, now that I know it does not have to be painful. God bless, Hazelpone ----- Original Message ----- > Yes, LOL, I should have left. Considering I've had three kids > without epidurals, I'd say I have a very high pain tolerance, so the > pain of the EMG threw me for a loop. > > When I had my single-fiber EMG, it was a different story. It was > painful, but the doctor was very concerned about my pain level, and > adjusted it accordingly, and also told me that topical anesthetic was > available for after the test. Just knowing he cared whether it hurt > was important. > > Take care, > RH > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Thanks so much, Dolores Laurie Fitzgerald laurie.fitzgerald@...> wrote:Dolores I hope you can get some help! laurie > I had one EMG in January and one later in a different area, I could really feel parts of me jumping when they pricked me. I do have peripheral neuropathy in both legs and trigemminal neuralgia in my right eye and right sice of my had and face for which I take neurotin. My current neurologist told me if at any time I have questions or concerns between appts to call, so since I know that others have this same problem I am going to give his office a call. I am very new at this game and really not sure what is symptomatic and what isn't, thanks to all that answered my post for helping clear this up for me. God Bless, Dolores > > Laurie Fitzgerald laurie.fitzgerald@...> wrote:Dolores > > I have the same kinds of sensations and my neuro said it was a form or > neuropathy - hypersensitive nerves which fire when they are suppose > to. I still have some, but they were greatly reduced when I started > taking the Lamictal for the myoclonus. > > For those who have had very painful EMGs, it depends on the doctor > doing them. I have had at least a dozen EMGs by many different people > and many different pain levels. If you are to have one, check to see > how often the doc does them and ask him/her to use pediatric needles. > I've had a sadistic doc or two and my MDA neuro who teaches EMG at two > medical schools says they can be close to painless and they are when > he does them. > > laurie > > > > I told my son about that strange sensation and he asked me if I had talked to one of my doctors and I told him " No " as I didn't care to have my PCP start shaking her head and not saying anything, just giving me that look again. I know it sure is a strange sensation, it reminds me of touching an electric fence one when I was about nine years old. Thanks for the post I feel much better knowing it isn't just me. Take care, Dolores > > > > Barbara Seaman wheatchild@...> wrote:No Dolores, you haven't lost it. I go through periods of time where just > > stepping on my right foot triggers a strong electric shock sensation in the > > ball of my foot. The first time this happened many years ago I was vacuuming > > and thought the vacuum had given me a shock. Not so. It kept happening, and > > it is stepping on the foot that triggers the shock. With every step, shock, > > shock, shock. Once it starts, the more I walk the worse it gets. If I rest > > for several hours, it will usually stop for a while. I haven't had this as > > much in recent years. I believe there is a medical term for this event, but > > have forgotten it. > > Barbara > > > > > > > > > Re: spasms > > > > > > I have always had severe leg cramps and I have taken several types of > > muscle > > > relaxers over the years. I have very severe pains in the right side of my > > head, ear, > > > face and I have stabbing pains in my right eye that feels like someone is > > sticking a > > > needle in my eye, I have been told that this is from trigeminial > > neuralgia. My > > > opthamologist spoke with my current neurologist and he increased the > > dosage of > > > neurotin from 300mg three times daily to 300mg four times daily and it > > has helped > > > the pain in the right side of my head, ear, face and eye considerably. At > > least I do > > > feel that it is livable now. At times my feet feel like (please don't > > think I've lost it) > > > there is an electrical current going thru them. I do have peripheral > > neuropathy in > > > both legs, but with the antodyne thereapy and the neurotin it isn't as > > bad as it was, > > > for which I am very thankful. I'm not sure if this is in any way helpful > > or if it just > > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > > > z39z@... wrote:Vivian, > > > > > > Blessedly mine don't last very long, or come that often, because they > > > are dreadfully painful. They seem to come when I move my foot > > > sideways, or stretch it a certain way. I immediately try to massage > > > it, and move the foot in the opposite directions with my hands, and > > > they seem to fade quite quickly then. I have always been out of the > > > company of others except my husband. I certainly would not want to be > > > seen by anyone when one hits. I also get a similar sharp pain in the > > > center of my head, when I yawn a certain way. It originates from one > > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I don't > > > move and just try to let my jaw go slack, it releases in a short time. > > > > > > > > > > > > > > > > > > > Vivian, > > > > > > > > Cannot help with an answer on this but sure would like to find one. > > > > I get this every now and then also and it is awful. Lately it has not > > > > been happening at night but during the day while I am at work. I try > > > > my best to kind of stand my foot up in my shoe and press my toes to > > > > the ground. Sometimes I do take my shoes off and press my toes to the > > > > floor. > > > > > > > > Janet > > > > spasms > > > > > > > > > > > > what other than med's can I do for spasms in the feet and > > > > toes....this will > > > > happen when I am lying down in bed and move/change position. Thanks > > > > Vivian > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Thanks so much, Dolores Laurie Fitzgerald laurie.fitzgerald@...> wrote:Dolores I hope you can get some help! laurie > I had one EMG in January and one later in a different area, I could really feel parts of me jumping when they pricked me. I do have peripheral neuropathy in both legs and trigemminal neuralgia in my right eye and right sice of my had and face for which I take neurotin. My current neurologist told me if at any time I have questions or concerns between appts to call, so since I know that others have this same problem I am going to give his office a call. I am very new at this game and really not sure what is symptomatic and what isn't, thanks to all that answered my post for helping clear this up for me. God Bless, Dolores > > Laurie Fitzgerald laurie.fitzgerald@...> wrote:Dolores > > I have the same kinds of sensations and my neuro said it was a form or > neuropathy - hypersensitive nerves which fire when they are suppose > to. I still have some, but they were greatly reduced when I started > taking the Lamictal for the myoclonus. > > For those who have had very painful EMGs, it depends on the doctor > doing them. I have had at least a dozen EMGs by many different people > and many different pain levels. If you are to have one, check to see > how often the doc does them and ask him/her to use pediatric needles. > I've had a sadistic doc or two and my MDA neuro who teaches EMG at two > medical schools says they can be close to painless and they are when > he does them. > > laurie > > > > I told my son about that strange sensation and he asked me if I had talked to one of my doctors and I told him " No " as I didn't care to have my PCP start shaking her head and not saying anything, just giving me that look again. I know it sure is a strange sensation, it reminds me of touching an electric fence one when I was about nine years old. Thanks for the post I feel much better knowing it isn't just me. Take care, Dolores > > > > Barbara Seaman wheatchild@...> wrote:No Dolores, you haven't lost it. I go through periods of time where just > > stepping on my right foot triggers a strong electric shock sensation in the > > ball of my foot. The first time this happened many years ago I was vacuuming > > and thought the vacuum had given me a shock. Not so. It kept happening, and > > it is stepping on the foot that triggers the shock. With every step, shock, > > shock, shock. Once it starts, the more I walk the worse it gets. If I rest > > for several hours, it will usually stop for a while. I haven't had this as > > much in recent years. I believe there is a medical term for this event, but > > have forgotten it. > > Barbara > > > > > > > > > Re: spasms > > > > > > I have always had severe leg cramps and I have taken several types of > > muscle > > > relaxers over the years. I have very severe pains in the right side of my > > head, ear, > > > face and I have stabbing pains in my right eye that feels like someone is > > sticking a > > > needle in my eye, I have been told that this is from trigeminial > > neuralgia. My > > > opthamologist spoke with my current neurologist and he increased the > > dosage of > > > neurotin from 300mg three times daily to 300mg four times daily and it > > has helped > > > the pain in the right side of my head, ear, face and eye considerably. At > > least I do > > > feel that it is livable now. At times my feet feel like (please don't > > think I've lost it) > > > there is an electrical current going thru them. I do have peripheral > > neuropathy in > > > both legs, but with the antodyne thereapy and the neurotin it isn't as > > bad as it was, > > > for which I am very thankful. I'm not sure if this is in any way helpful > > or if it just > > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > > > z39z@... wrote:Vivian, > > > > > > Blessedly mine don't last very long, or come that often, because they > > > are dreadfully painful. They seem to come when I move my foot > > > sideways, or stretch it a certain way. I immediately try to massage > > > it, and move the foot in the opposite directions with my hands, and > > > they seem to fade quite quickly then. I have always been out of the > > > company of others except my husband. I certainly would not want to be > > > seen by anyone when one hits. I also get a similar sharp pain in the > > > center of my head, when I yawn a certain way. It originates from one > > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I don't > > > move and just try to let my jaw go slack, it releases in a short time. > > > > > > > > > > > > > > > > > > > Vivian, > > > > > > > > Cannot help with an answer on this but sure would like to find one. > > > > I get this every now and then also and it is awful. Lately it has not > > > > been happening at night but during the day while I am at work. I try > > > > my best to kind of stand my foot up in my shoe and press my toes to > > > > the ground. Sometimes I do take my shoes off and press my toes to the > > > > floor. > > > > > > > > Janet > > > > spasms > > > > > > > > > > > > what other than med's can I do for spasms in the feet and > > > > toes....this will > > > > happen when I am lying down in bed and move/change position. Thanks > > > > Vivian > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 I love the Birkies, but can no longer wear them as they are not good when one has balance problems. I wear athletic shoes, but am not comfortable in them. I, also, prefer to go barefoot in the house. laurie > Go Birkies! For sure Birkies are big in this university/hippie town. (More > hippies here than in California, my San Diego son says.) I have friends who > wear them year round, with wool socks in winter, shoveling snow. > Unfortunately, Birkies and I are not compatible for a couple of reasons. My > feet, in fact, have never been shoe-friendly. I developed huge bunions at > age 6 with fallen metatarsals and overlapping crooked toes. Imagine a bad > set of teeth and you'll get the picture. I wore custom arch supports in my > shoes throughout childhood but my feet still hurt all day every day. Thus > shoes in general I have associated with pain and have always gone barefoot > whenever possible, which is 24/7 now. In winter I wear layers of polartec > socks. At this point shoes create another problem. My feet have a marked > drag; they scoot along and don't lift. In this mode, shoe soles of any sort > tend to catch on carpet or tile and send me pitching forward dangerously. > And when I try to lift my feet, balance goes totally kaput. I buy the > lightest weight shoes I can find to wear when I go out. Anything big and > chunky (and in style) and my legs quit entirely. Usually I go out in a > chair, but I like to walk around a little, even if I arrive > sitting......remnants of silly pride, I guess. > > Cheers! > B > > > > > > Re: spasms > > > > > > > > I have always had severe leg cramps and I have taken several types > > > of > > > muscle > > > > relaxers over the years. I have very severe pains in the right > > > side of my > > > head, ear, > > > > face and I have stabbing pains in my right eye that feels like > > > someone is > > > sticking a > > > > needle in my eye, I have been told that this is from trigeminial > > > neuralgia. My > > > > opthamologist spoke with my current neurologist and he increased the > > > dosage of > > > > neurotin from 300mg three times daily to 300mg four times daily > > > and it > > > has helped > > > > the pain in the right side of my head, ear, face and eye > > > considerably. At > > > least I do > > > > feel that it is livable now. At times my feet feel like (please > > > don't > > > think I've lost it) > > > > there is an electrical current going thru them. I do have > > > peripheral > > > neuropathy in > > > > both legs, but with the antodyne thereapy and the neurotin it > > > isn't as > > > bad as it was, > > > > for which I am very thankful. I'm not sure if this is in any way > > > helpful > > > or if it just > > > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > > > > > z39z@... wrote:Vivian, > > > > > > > > Blessedly mine don't last very long, or come that often, because > > > they > > > > are dreadfully painful. They seem to come when I move my foot > > > > sideways, or stretch it a certain way. I immediately try to massage > > > > it, and move the foot in the opposite directions with my hands, and > > > > they seem to fade quite quickly then. I have always been out of the > > > > company of others except my husband. I certainly would not want to > > > be > > > > seen by anyone when one hits. I also get a similar sharp pain in the > > > > center of my head, when I yawn a certain way. It originates from one > > > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I > > > don't > > > > move and just try to let my jaw go slack, it releases in a short > > > time. > > > > > > > > > > > > > > > > > > > > > > > > > Vivian, > > > > > > > > > > Cannot help with an answer on this but sure would like to find > > > one. > > > > > I get this every now and then also and it is awful. Lately it > > > has not > > > > > been happening at night but during the day while I am at work. I > > > try > > > > > my best to kind of stand my foot up in my shoe and press my toes > > > to > > > > > the ground. Sometimes I do take my shoes off and press my toes > > > to the > > > > > floor. > > > > > > > > > > Janet > > > > > spasms > > > > > > > > > > > > > > > what other than med's can I do for spasms in the feet and > > > > > toes....this will > > > > > happen when I am lying down in bed and move/change position. > > > Thanks > > > > > Vivian > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 I love the Birkies, but can no longer wear them as they are not good when one has balance problems. I wear athletic shoes, but am not comfortable in them. I, also, prefer to go barefoot in the house. laurie > Go Birkies! For sure Birkies are big in this university/hippie town. (More > hippies here than in California, my San Diego son says.) I have friends who > wear them year round, with wool socks in winter, shoveling snow. > Unfortunately, Birkies and I are not compatible for a couple of reasons. My > feet, in fact, have never been shoe-friendly. I developed huge bunions at > age 6 with fallen metatarsals and overlapping crooked toes. Imagine a bad > set of teeth and you'll get the picture. I wore custom arch supports in my > shoes throughout childhood but my feet still hurt all day every day. Thus > shoes in general I have associated with pain and have always gone barefoot > whenever possible, which is 24/7 now. In winter I wear layers of polartec > socks. At this point shoes create another problem. My feet have a marked > drag; they scoot along and don't lift. In this mode, shoe soles of any sort > tend to catch on carpet or tile and send me pitching forward dangerously. > And when I try to lift my feet, balance goes totally kaput. I buy the > lightest weight shoes I can find to wear when I go out. Anything big and > chunky (and in style) and my legs quit entirely. Usually I go out in a > chair, but I like to walk around a little, even if I arrive > sitting......remnants of silly pride, I guess. > > Cheers! > B > > > > > > Re: spasms > > > > > > > > I have always had severe leg cramps and I have taken several types > > > of > > > muscle > > > > relaxers over the years. I have very severe pains in the right > > > side of my > > > head, ear, > > > > face and I have stabbing pains in my right eye that feels like > > > someone is > > > sticking a > > > > needle in my eye, I have been told that this is from trigeminial > > > neuralgia. My > > > > opthamologist spoke with my current neurologist and he increased the > > > dosage of > > > > neurotin from 300mg three times daily to 300mg four times daily > > > and it > > > has helped > > > > the pain in the right side of my head, ear, face and eye > > > considerably. At > > > least I do > > > > feel that it is livable now. At times my feet feel like (please > > > don't > > > think I've lost it) > > > > there is an electrical current going thru them. I do have > > > peripheral > > > neuropathy in > > > > both legs, but with the antodyne thereapy and the neurotin it > > > isn't as > > > bad as it was, > > > > for which I am very thankful. I'm not sure if this is in any way > > > helpful > > > or if it just > > > > sounds like the ramblings of an " old " lady (ha). Dolores johnson > > > > > > > > z39z@... wrote:Vivian, > > > > > > > > Blessedly mine don't last very long, or come that often, because > > > they > > > > are dreadfully painful. They seem to come when I move my foot > > > > sideways, or stretch it a certain way. I immediately try to massage > > > > it, and move the foot in the opposite directions with my hands, and > > > > they seem to fade quite quickly then. I have always been out of the > > > > company of others except my husband. I certainly would not want to > > > be > > > > seen by anyone when one hits. I also get a similar sharp pain in the > > > > center of my head, when I yawn a certain way. It originates from one > > > > of my jaw muscles, I am sure. Again, it grabs sharply, but if I > > > don't > > > > move and just try to let my jaw go slack, it releases in a short > > > time. > > > > > > > > > > > > > > > > > > > > > > > > > Vivian, > > > > > > > > > > Cannot help with an answer on this but sure would like to find > > > one. > > > > > I get this every now and then also and it is awful. Lately it > > > has not > > > > > been happening at night but during the day while I am at work. I > > > try > > > > > my best to kind of stand my foot up in my shoe and press my toes > > > to > > > > > the ground. Sometimes I do take my shoes off and press my toes > > > to the > > > > > floor. > > > > > > > > > > Janet > > > > > spasms > > > > > > > > > > > > > > > what other than med's can I do for spasms in the feet and > > > > > toes....this will > > > > > happen when I am lying down in bed and move/change position. > > > Thanks > > > > > Vivian > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Honestly, I'm not 100% sure why they do the test at all, as it doesn't change treatment and there are many other tests that are more specific for various neuromuscular conditions. As an example, I had one failed spinal tap, and they'll have to have me under general anesthesia to do another. I also refused to have a cerebral angiogram done, because of the risk of stroke (especially with previous stroke-like episodes and high anticardiolipin antibodies). You can always refuse a test, and at the very least, DEMAND to know what will be gained by performing the test. Take care, RH > Hi all, > > Topical anesthetic, my tech (whatever) was a sadist! More info. I need in > case I ever am pressured to take the test again. They will have hell to pay > with me if they try, now that I know it does not have to be painful. > > God bless, > Hazelpone > > ----- Original Message ----- > From: " ohgminion " > > > > Yes, LOL, I should have left. Considering I've had three kids > > without epidurals, I'd say I have a very high pain tolerance, so the > > pain of the EMG threw me for a loop. > > > > When I had my single-fiber EMG, it was a different story. It was > > painful, but the doctor was very concerned about my pain level, and > > adjusted it accordingly, and also told me that topical anesthetic was > > available for after the test. Just knowing he cared whether it hurt > > was important. > > > > Take care, > > RH > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 RH An EMG was what diagnosed a metabolic myopathy which was the beginning of a diagnosis. It is the primary tool to determine if neuropathy is sensory, motor or a combination of the two. It is used to track the progression of neuropathy. There may be more, but these are the things I am familiar with. laurie > Honestly, I'm not 100% sure why they do the test at all, as it > doesn't change treatment and there are many other tests that are more > specific for various neuromuscular conditions. > > As an example, I had one failed spinal tap, and they'll have to have > me under general anesthesia to do another. I also refused to have a > cerebral angiogram done, because of the risk of stroke (especially > with previous stroke-like episodes and high anticardiolipin > antibodies). > > You can always refuse a test, and at the very least, DEMAND to know > what will be gained by performing the test. > > Take care, > RH > > > > Hi all, > > > > Topical anesthetic, my tech (whatever) was a sadist! More info. I > need in > > case I ever am pressured to take the test again. They will have > hell to pay > > with me if they try, now that I know it does not have to be painful. > > > > God bless, > > Hazelpone > > > > ----- Original Message ----- > > From: " ohgminion " > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > without epidurals, I'd say I have a very high pain tolerance, so > the > > > pain of the EMG threw me for a loop. > > > > > > When I had my single-fiber EMG, it was a different story. It was > > > painful, but the doctor was very concerned about my pain level, > and > > > adjusted it accordingly, and also told me that topical anesthetic > was > > > available for after the test. Just knowing he cared whether it > hurt > > > was important. > > > > > > Take care, > > > RH > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 Yes, this is my perspective too, Laurie. Personally, the EMG has been invaluable in my case for many reasons. The first one in 1980 started us on the right track, got the doctors to take the problems seriously, though, of course, this was back in the dark ages of mito when no one knew anything about these diseases or how to test for them. It was not even possible to get a diagnosis of an OXPHOS deficiency at that time. The EMG was also instrumental in getting my doctors to consider looking for the second mito defect, because there did not seem to be any way the first defect, CPT def, could cause what they were finding on the EMGs. Also, for years I was reporting progression to my doctor in terms of reduced ability to function, but he, being the scientist, did not want to accept that I was really progressing until another EMG was done. He was stunned by the results, quite chastened, called in various specialists for consults, etc, and renewed his efforts to help. It made a big difference in my care. The latest EMG done a year ago was very helpful to my new neuro, as far as confirming my estimate of where I am at present. Among other things, the EMGs have been a tremendous help in establishing my credibility with my doctors. What I was reporting was confirmed. Again, this is my personal perspective, but I don't find the pain of an EMG a big problem. It is temporary, even if sometimes severe, and I understand that the information obtained may be helpful. Therefore I'm willing to do it. I've had a wide variety of pain levels with various EMGs, (so many I can't remember how many) some milder, some pretty bad, but the pain of an EMG does not come close to the kinds of pain I experience due to the disease. So by comparison I find even the worst EMG tolerable. I realize that many mito patients have normal EMGs so the test is not as useful in those cases. But for me, myopathy has been prominent and major from the beginning, and we have found no other objective measure. Take care, Barbara _____ From: [mailto: ] On Behalf Of Laurie Fitzgerald Sent: Friday, June 03, 2005 6:10 AM To: Subject: Re: spasms RH An EMG was what diagnosed a metabolic myopathy which was the beginning of a diagnosis. It is the primary tool to determine if neuropathy is sensory, motor or a combination of the two. It is used to track the progression of neuropathy. There may be more, but these are the things I am familiar with. laurie > Honestly, I'm not 100% sure why they do the test at all, as it > doesn't change treatment and there are many other tests that are more > specific for various neuromuscular conditions. > > As an example, I had one failed spinal tap, and they'll have to have > me under general anesthesia to do another. I also refused to have a > cerebral angiogram done, because of the risk of stroke (especially > with previous stroke-like episodes and high anticardiolipin > antibodies). > > You can always refuse a test, and at the very least, DEMAND to know > what will be gained by performing the test. > > Take care, > RH > > > > Hi all, > > > > Topical anesthetic, my tech (whatever) was a sadist! More info. I > need in > > case I ever am pressured to take the test again. They will have > hell to pay > > with me if they try, now that I know it does not have to be painful. > > > > God bless, > > Hazelpone > > > > ----- Original Message ----- > > From: " ohgminion " > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > without epidurals, I'd say I have a very high pain tolerance, so > the > > > pain of the EMG threw me for a loop. > > > > > > When I had my single-fiber EMG, it was a different story. It was > > > painful, but the doctor was very concerned about my pain level, > and > > > adjusted it accordingly, and also told me that topical anesthetic > was > > > available for after the test. Just knowing he cared whether it > hurt > > > was important. > > > > > > Take care, > > > RH > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 Amen, RH. > Honestly, I'm not 100% sure why they do the test at all, as it > doesn't change treatment and there are many other tests that are more > specific for various neuromuscular conditions. > > As an example, I had one failed spinal tap, and they'll have to have > me under general anesthesia to do another. I also refused to have a > cerebral angiogram done, because of the risk of stroke (especially > with previous stroke-like episodes and high anticardiolipin > antibodies). > > You can always refuse a test, and at the very least, DEMAND to know > what will be gained by performing the test. > > Take care, > RH > > > > Hi all, > > > > Topical anesthetic, my tech (whatever) was a sadist! More info. I > need in > > case I ever am pressured to take the test again. They will have > hell to pay > > with me if they try, now that I know it does not have to be painful. > > > > God bless, > > Hazelpone > > > > ----- Original Message ----- > > From: " ohgminion " > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > without epidurals, I'd say I have a very high pain tolerance, so > the > > > pain of the EMG threw me for a loop. > > > > > > When I had my single-fiber EMG, it was a different story. It was > > > painful, but the doctor was very concerned about my pain level, > and > > > adjusted it accordingly, and also told me that topical anesthetic > was > > > available for after the test. Just knowing he cared whether it > hurt > > > was important. > > > > > > Take care, > > > RH > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 You are right, Barbara and Lauire. When they are done properly, and when they have a positive finding, they can help with diagnosis. Personally, I have had several that have been negative, and I guess that is a good thing in the big picture. But, the interpretation that since they were negative, there was nothing wrong with my muscle function was most irritating, and I guess that is what I was reacting to. I do strongly agree with RH as far as asking what information a test will give, and asking what the best test is for the specific symptoms. There is an old saying, Russian I am told, that comes to mind - " If you have a hammer, everything looks like a nail. " Regards to all Sunny > Yes, this is my perspective too, Laurie. Personally, the EMG has been > invaluable in my case for many reasons. The first one in 1980 started > us on > the right track, got the doctors to take the problems seriously, > though, of > course, this was back in the dark ages of mito when no one knew > anything > about these diseases or how to test for them. It was not even > possible to > get a diagnosis of an OXPHOS deficiency at that time. The EMG was also > instrumental in getting my doctors to consider looking for the second > mito > defect, because there did not seem to be any way the first defect, > CPT def, > could cause what they were finding on the EMGs. Also, for years I was > reporting progression to my doctor in terms of reduced ability to > function, > but he, being the scientist, did not want to accept that I was really > progressing until another EMG was done. He was stunned by the > results, quite > chastened, called in various specialists for consults, etc, and > renewed his > efforts to help. It made a big difference in my care. The latest EMG > done a > year ago was very helpful to my new neuro, as far as confirming my > estimate > of where I am at present. Among other things, the EMGs have been a > tremendous help in establishing my credibility with my doctors. What > I was > reporting was confirmed. Again, this is my personal perspective, but > I > don't find the pain of an EMG a big problem. It is temporary, even if > sometimes severe, and I understand that the information obtained may > be > helpful. Therefore I'm willing to do it. I've had a wide variety of > pain > levels with various EMGs, (so many I can't remember how many) some > milder, > some pretty bad, but the pain of an EMG does not come close to the > kinds of > pain I experience due to the disease. So by comparison I find even > the worst > EMG tolerable. I realize that many mito patients have normal EMGs so > the > test is not as useful in those cases. But for me, myopathy has been > prominent and major from the beginning, and we have found no other > objective > measure. > > > > Take care, > > Barbara > > > > _____ > > From: [mailto: ] On > Behalf > Of Laurie Fitzgerald > Sent: Friday, June 03, 2005 6:10 AM > To: > Subject: Re: spasms > > > > RH > > An EMG was what diagnosed a metabolic myopathy which was the beginning > of a diagnosis. > > It is the primary tool to determine if neuropathy is sensory, motor or > a combination of the two. It is used to track the progression of > neuropathy. > > There may be more, but these are the things I am familiar with. > > laurie > > > > Honestly, I'm not 100% sure why they do the test at all, as it > > doesn't change treatment and there are many other tests that are > more > > specific for various neuromuscular conditions. > > > > As an example, I had one failed spinal tap, and they'll have to have > > me under general anesthesia to do another. I also refused to have a > > cerebral angiogram done, because of the risk of stroke (especially > > with previous stroke-like episodes and high anticardiolipin > > antibodies). > > > > You can always refuse a test, and at the very least, DEMAND to know > > what will be gained by performing the test. > > > > Take care, > > RH > > > > > > > Hi all, > > > > > > Topical anesthetic, my tech (whatever) was a sadist! More info. I > > need in > > > case I ever am pressured to take the test again. They will have > > hell to pay > > > with me if they try, now that I know it does not have to be > painful. > > > > > > God bless, > > > Hazelpone > > > > > > ----- Original Message ----- > > > From: " ohgminion " > > > > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > > without epidurals, I'd say I have a very high pain tolerance, so > > the > > > > pain of the EMG threw me for a loop. > > > > > > > > When I had my single-fiber EMG, it was a different story. It > was > > > > painful, but the doctor was very concerned about my pain level, > > and > > > > adjusted it accordingly, and also told me that topical > anesthetic > > was > > > > available for after the test. Just knowing he cared whether it > > hurt > > > > was important. > > > > > > > > Take care, > > > > RH > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author > of this > e mail is entirely responsible for its content. List members are > reminded of > their responsibility to evaluate the content of the postings and > consult > with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends > one is > automatically moderated or removed depending on the severity of the > attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 What a disgrace, the doctors who are so cavalier, and we who don't complain loudly enough. A resident that laughs when you're saying you have pain should never work with patients again, period, no excuses. How I wish that hospitals and/or state medical boards operated a feedback forum where people could report specific allegations about specific doctors (and techs). It's probably never occurred to this resident that people could vary, as to how much pain is felt from an EMG. I just HATE that " it doesn't hurt " line, without that all-important disclaimer " in my opinion " . Reminds me of the vast abuse that parents sometimes so unfeelingly heap onto their toddlers, when they tell them " it isn't cold outside " when their child is shivering, or that their burn or cut " doesn't hurt " . These kinds of statements are extremely demoralizing and invalidating. My EMG/NC hurt like hell, total torture, almost all through the three and a half hour ordeal. Nonetheless, the resident was incredibly kind and understanding. We joked and joked, all in a well-intentioned " bit " that we both started together (but I suspect he was recycling some of it). He would say " OK now we start again over here in the right calf muscle, unless of course you want to reveal the secret location of the treasure " . And I would say " Yes, yes, it's buried under the tree in my yard " . And he would say " I don't believe you, you must confess " and then he'd zap me. And with the pain I would call out, which he encouraged. I felt very cared for, and VALIDATED, as we dreamt up various skits and schemes to keep me together while it continued, and he told me how good I was doing, etc. He told me all about his findings. At one point he had to call in a more senior " supervisor " doc, who was a REAL jerk about everything. As this supervisor was leaving, he noticed my wife sitting there and said to her " You must be the wife, or something, right? Do you have any questions? " and then left before she could finish her answer. Later I asked my doc what the super's name was, and he said " Oh you mean Mr. Football-Head? " and the tech over in the corner stifled a laugh. Old joke, apparently. But then I did get the name of that jerk, who unfortunately will go on the rest of his career tormenting people in pain. But I'm convinced, that us mito people with PN are probably FAR more pained than typical, by this procedure, and docs who can't figure that out should be....well, never mind. Steve D. Date: Wed, 01 Jun 2005 22:48:30 -0400 Subject: Re: spasms Hi RH, I am in the same boat as most of you. My EMG was very painful and I will NEVER have another one. The Resident who did mine thought I was a baby, and was laughing at me as the tears ran down my face. It was horrible. And he told me " It doesn't hurt " I said " If you think it doesn't hurt, Can I do it to you when we are done? " He said " I have had EMG's done. When we did rotations in Neurology, all of us used to take turns doing them on each other, so I know they don't hurt. " Well, mine hurt. :'( While the doctor was on the phone, it would have been a good time to jump off the table and run for your life. :-D Hugs, Ann-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 Unfortunately, I think some doctors rely on one or two tests heavily - a normal EMG was part of what made my first neuro think I was " making it up " , so I'm sort of biased against it (oh, and the pain factor for me too!). Is a Complex I defect considered a metabolic myopathy? Because my muscle biopsy showed a complete lack of Complex I activity, but my EMG was normal. Although I wouldn't put it past the doctor who performed it to have screwed up the results too! Take care, RH > > > Hi all, > > > > > > Topical anesthetic, my tech (whatever) was a sadist! More info. I > > need in > > > case I ever am pressured to take the test again. They will have > > hell to pay > > > with me if they try, now that I know it does not have to be painful. > > > > > > God bless, > > > Hazelpone > > > > > > ----- Original Message ----- > > > From: " ohgminion " > > > > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > > without epidurals, I'd say I have a very high pain tolerance, so > > the > > > > pain of the EMG threw me for a loop. > > > > > > > > When I had my single-fiber EMG, it was a different story. It was > > > > painful, but the doctor was very concerned about my pain level, > > and > > > > adjusted it accordingly, and also told me that topical anesthetic > > was > > > > available for after the test. Just knowing he cared whether it > > hurt > > > > was important. > > > > > > > > Take care, > > > > RH > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 Hi Steve, Thank you so much for your kind and caring reply. You made me feel 100% better. :-) I am so thankful that you are the doctor who preformed your EMG/NC was so thoughtful and caring while doing the test on you, we need more doctors like him, ones that aren't afraid to admit that it does hurt, but is also willing to take your mind off the actual procedure and redirect the patients anxiety towards a playful and fun game with jokes, etc.... You had a GEM of a doctor there!!! Hugs, Ann-Marie At 08:57 PM 6/3/2005, you wrote: >What a disgrace, the doctors who are so cavalier, and we who don't complain >loudly enough. A resident that laughs when you're saying you have pain >should never work with patients again, period, no excuses. How I wish that >hospitals and/or state medical boards operated a feedback forum where people >could report specific allegations about specific doctors (and techs). > >It's probably never occurred to this resident that people could vary, as to >how much pain is felt from an EMG. I just HATE that " it doesn't hurt " line, >without that all-important disclaimer " in my opinion " . Reminds me of the >vast abuse that parents sometimes so unfeelingly heap onto their toddlers, >when they tell them " it isn't cold outside " when their child is shivering, >or that their burn or cut " doesn't hurt " . These kinds of statements are >extremely demoralizing and invalidating. > >My EMG/NC hurt like hell, total torture, almost all through the three and a >half hour ordeal. Nonetheless, the resident was incredibly kind and >understanding. We joked and joked, all in a well-intentioned " bit " that we >both started together (but I suspect he was recycling some of it). He would >say " OK now we start again over here in the right calf muscle, unless of >course you want to reveal the secret location of the treasure " . And I would >say " Yes, yes, it's buried under the tree in my yard " . And he would say " I >don't believe you, you must confess " and then he'd zap me. And with the pain >I would call out, which he encouraged. I felt very cared for, and VALIDATED, >as we dreamt up various skits and schemes to keep me together while it >continued, and he told me how good I was doing, etc. He told me all about >his findings. At one point he had to call in a more senior " supervisor " doc, >who was a REAL jerk about everything. As this supervisor was leaving, he >noticed my wife sitting there and said to her " You must be the wife, or >something, right? Do you have any questions? " and then left before she could >finish her answer. Later I asked my doc what the super's name was, and he >said " Oh you mean Mr. Football-Head? " and the tech over in the corner >stifled a laugh. Old joke, apparently. But then I did get the name of that >jerk, who unfortunately will go on the rest of his career tormenting people >in pain. > >But I'm convinced, that us mito people with PN are probably FAR more pained >than typical, by this procedure, and docs who can't figure that out should >be....well, never mind. > >Steve D. > > Date: Wed, 01 Jun 2005 22:48:30 -0400 > >Subject: Re: spasms > >Hi RH, > >I am in the same boat as most of you. My EMG was very painful and I will >NEVER have another one. >The Resident who did mine thought I was a baby, and was laughing at me as >the tears ran down my face. It was horrible. And he told me " It doesn't >hurt " I said " If you think it doesn't hurt, Can I do >it to you when we are done? " He said " I have had EMG's done. When we did >rotations in Neurology, all of us used to take turns doing them on each >other, so I know they don't hurt. " Well, mine hurt. :'( > > >While the doctor was on the phone, it would have been a good time to jump >off the table and run for your life. :-D > >Hugs, >Ann-Marie > > > >Medical advice, information, opinions, data and statements contained >herein are not necessarily those of the list moderators. The author of >this e mail is entirely responsible for its content. List members are >reminded of their responsibility to evaluate the content of the postings >and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is >automatically moderated or removed depending on the severity of the attack. > > > > >---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 > Among other things, the EMGs have been a > tremendous help in establishing my credibility > with my doctors. What I was reporting was confirmed. As in the post I just put up, I had the opposite result with my doctors - the negative EMG result reduced my credibility to zero with my doctors at the time and made them think I was making up symptoms (how can you have a normal EMG and have muscle weakness?). It led to a very frustrating time in my life when only my husband believed I was actually sick and was supporting me, the medical people I was dealing with did not. I'm sure there are other tests that fit this bill for others on this list, unfortunately. No one test seems to be definitive for mito, although IMHO the lactate/pyruvate and fresh muscle biopsy with respiratory chain testing seem to get many people into the dx category. But even those can be normal at times in an affected person. Take care, RH > > > > _____ > > From: [mailto: ] On Behalf > Of Laurie Fitzgerald > Sent: Friday, June 03, 2005 6:10 AM > To: > Subject: Re: spasms > > > > RH > > An EMG was what diagnosed a metabolic myopathy which was the beginning > of a diagnosis. > > It is the primary tool to determine if neuropathy is sensory, motor or > a combination of the two. It is used to track the progression of > neuropathy. > > There may be more, but these are the things I am familiar with. > > laurie > > > > Honestly, I'm not 100% sure why they do the test at all, as it > > doesn't change treatment and there are many other tests that are more > > specific for various neuromuscular conditions. > > > > As an example, I had one failed spinal tap, and they'll have to have > > me under general anesthesia to do another. I also refused to have a > > cerebral angiogram done, because of the risk of stroke (especially > > with previous stroke-like episodes and high anticardiolipin > > antibodies). > > > > You can always refuse a test, and at the very least, DEMAND to know > > what will be gained by performing the test. > > > > Take care, > > RH > > > > > > > Hi all, > > > > > > Topical anesthetic, my tech (whatever) was a sadist! More info. I > > need in > > > case I ever am pressured to take the test again. They will have > > hell to pay > > > with me if they try, now that I know it does not have to be painful. > > > > > > God bless, > > > Hazelpone > > > > > > ----- Original Message ----- > > > From: " ohgminion " > > > > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > > without epidurals, I'd say I have a very high pain tolerance, so > > the > > > > pain of the EMG threw me for a loop. > > > > > > > > When I had my single-fiber EMG, it was a different story. It was > > > > painful, but the doctor was very concerned about my pain level, > > and > > > > adjusted it accordingly, and also told me that topical anesthetic > > was > > > > available for after the test. Just knowing he cared whether it > > hurt > > > > was important. > > > > > > > > Take care, > > > > RH > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded of > their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 RH I also have a complete absence of Complex I. It can cause a myopathy, but also many other things. Being mito, it is metabolic. My first 5 or 6 EMGs were normal or slightly abnormal. It wasn't until one was done in conjuction with exercise that it was abnormal. At this time, my main symptoms were neuro-muscular. As my mito progressed, the EMGs became abnormal. My last one, after being on the cocktail was normal. My neuro felt this was a good indication that they were helping. laurie > > Among other things, the EMGs have been a > > tremendous help in establishing my credibility > > with my doctors. What I was reporting was confirmed. > > As in the post I just put up, I had the opposite result with my > doctors - the negative EMG result reduced my credibility to zero with > my doctors at the time and made them think I was making up symptoms > (how can you have a normal EMG and have muscle weakness?). It led to > a very frustrating time in my life when only my husband believed I > was actually sick and was supporting me, the medical people I was > dealing with did not. > > I'm sure there are other tests that fit this bill for others on this > list, unfortunately. No one test seems to be definitive for mito, > although IMHO the lactate/pyruvate and fresh muscle biopsy with > respiratory chain testing seem to get many people into the dx > category. But even those can be normal at times in an affected > person. > > Take care, > RH > > > > > > > > > > > _____ > > > > From: [mailto: ] > On Behalf > > Of Laurie Fitzgerald > > Sent: Friday, June 03, 2005 6:10 AM > > To: > > Subject: Re: spasms > > > > > > > > RH > > > > An EMG was what diagnosed a metabolic myopathy which was the > beginning > > of a diagnosis. > > > > It is the primary tool to determine if neuropathy is sensory, motor > or > > a combination of the two. It is used to track the progression of > > neuropathy. > > > > There may be more, but these are the things I am familiar with. > > > > laurie > > > > > > > Honestly, I'm not 100% sure why they do the test at all, as it > > > doesn't change treatment and there are many other tests that are > more > > > specific for various neuromuscular conditions. > > > > > > As an example, I had one failed spinal tap, and they'll have to > have > > > me under general anesthesia to do another. I also refused to > have a > > > cerebral angiogram done, because of the risk of stroke (especially > > > with previous stroke-like episodes and high anticardiolipin > > > antibodies). > > > > > > You can always refuse a test, and at the very least, DEMAND to > know > > > what will be gained by performing the test. > > > > > > Take care, > > > RH > > > > > > > > > > Hi all, > > > > > > > > Topical anesthetic, my tech (whatever) was a sadist! More > info. I > > > need in > > > > case I ever am pressured to take the test again. They will have > > > hell to pay > > > > with me if they try, now that I know it does not have to be > painful. > > > > > > > > God bless, > > > > Hazelpone > > > > > > > > ----- Original Message ----- > > > > From: " ohgminion " > > > > > > > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > > > without epidurals, I'd say I have a very high pain tolerance, > so > > > the > > > > > pain of the EMG threw me for a loop. > > > > > > > > > > When I had my single-fiber EMG, it was a different story. It > was > > > > > painful, but the doctor was very concerned about my pain > level, > > > and > > > > > adjusted it accordingly, and also told me that topical > anesthetic > > > was > > > > > available for after the test. Just knowing he cared whether > it > > > hurt > > > > > was important. > > > > > > > > > > Take care, > > > > > RH > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained > > herein are not necessarily those of the list moderators. The author > of this > > e mail is entirely responsible for its content. List members are > reminded of > > their responsibility to evaluate the content of the postings and > consult > > with their physicians regarding changes in their own treatment. > > > > > > Personal attacks are not permitted on the list and anyone who > sends one is > > automatically moderated or removed depending on the severity of the > attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 Yes, I understand that our experiences were different. And I agree that some doctors use normal results as excuse to get rid of a patient. There are all kinds, unfortunately. My point was just that mito manifestations can vary markedly from patient and patient. Therefore, I would not want to characterize the EMG as useless or a waste of time (and pain) in the diagnosis of mitochondrial disease. It has been invaluable for me. Take care, Barbara _____ From: [mailto: ] On Behalf Of ohgminion Sent: Friday, June 03, 2005 10:42 PM To: Subject: Re: spasms > Among other things, the EMGs have been a > tremendous help in establishing my credibility > with my doctors. What I was reporting was confirmed. As in the post I just put up, I had the opposite result with my doctors - the negative EMG result reduced my credibility to zero with my doctors at the time and made them think I was making up symptoms (how can you have a normal EMG and have muscle weakness?). It led to a very frustrating time in my life when only my husband believed I was actually sick and was supporting me, the medical people I was dealing with did not. I'm sure there are other tests that fit this bill for others on this list, unfortunately. No one test seems to be definitive for mito, although IMHO the lactate/pyruvate and fresh muscle biopsy with respiratory chain testing seem to get many people into the dx category. But even those can be normal at times in an affected person. Take care, RH > > > > _____ > > From: [mailto: ] On Behalf > Of Laurie Fitzgerald > Sent: Friday, June 03, 2005 6:10 AM > To: > Subject: Re: spasms > > > > RH > > An EMG was what diagnosed a metabolic myopathy which was the beginning > of a diagnosis. > > It is the primary tool to determine if neuropathy is sensory, motor or > a combination of the two. It is used to track the progression of > neuropathy. > > There may be more, but these are the things I am familiar with. > > laurie > > > > Honestly, I'm not 100% sure why they do the test at all, as it > > doesn't change treatment and there are many other tests that are more > > specific for various neuromuscular conditions. > > > > As an example, I had one failed spinal tap, and they'll have to have > > me under general anesthesia to do another. I also refused to have a > > cerebral angiogram done, because of the risk of stroke (especially > > with previous stroke-like episodes and high anticardiolipin > > antibodies). > > > > You can always refuse a test, and at the very least, DEMAND to know > > what will be gained by performing the test. > > > > Take care, > > RH > > > > > > > Hi all, > > > > > > Topical anesthetic, my tech (whatever) was a sadist! More info. I > > need in > > > case I ever am pressured to take the test again. They will have > > hell to pay > > > with me if they try, now that I know it does not have to be painful. > > > > > > God bless, > > > Hazelpone > > > > > > ----- Original Message ----- > > > From: " ohgminion " > > > > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > > without epidurals, I'd say I have a very high pain tolerance, so > > the > > > > pain of the EMG threw me for a loop. > > > > > > > > When I had my single-fiber EMG, it was a different story. It was > > > > painful, but the doctor was very concerned about my pain level, > > and > > > > adjusted it accordingly, and also told me that topical anesthetic > > was > > > > available for after the test. Just knowing he cared whether it > > hurt > > > > was important. > > > > > > > > Take care, > > > > RH > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded of > their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 Thanks Laurie. That explanation helps. God bless, Hazelpone Re: spasms > RH > > An EMG was what diagnosed a metabolic myopathy which was the beginning > of a diagnosis. > > It is the primary tool to determine if neuropathy is sensory, motor or > a combination of the two. It is used to track the progression of > neuropathy. > > There may be more, but these are the things I am familiar with. > > laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2005 Report Share Posted June 5, 2005 Glad to hear you had a normal EMG in response to the supplements. I'm a bit afraid of doing tests after fatiguing exercise, as my husband isn't available to drive most of the time, so I tend to conserve my energy on doctor's appointments. Take care, RH > > > > > Hi all, > > > > > > > > > > Topical anesthetic, my tech (whatever) was a sadist! More > > info. I > > > > need in > > > > > case I ever am pressured to take the test again. They will have > > > > hell to pay > > > > > with me if they try, now that I know it does not have to be > > painful. > > > > > > > > > > God bless, > > > > > Hazelpone > > > > > > > > > > ----- Original Message ----- > > > > > From: " ohgminion " > > > > > > > > > > > > > > > > Yes, LOL, I should have left. Considering I've had three kids > > > > > > without epidurals, I'd say I have a very high pain tolerance, > > so > > > > the > > > > > > pain of the EMG threw me for a loop. > > > > > > > > > > > > When I had my single-fiber EMG, it was a different story. It > > was > > > > > > painful, but the doctor was very concerned about my pain > > level, > > > > and > > > > > > adjusted it accordingly, and also told me that topical > > anesthetic > > > > was > > > > > > available for after the test. Just knowing he cared whether > > it > > > > hurt > > > > > > was important. > > > > > > > > > > > > Take care, > > > > > > RH > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > > contained > > > herein are not necessarily those of the list moderators. The author > > of this > > > e mail is entirely responsible for its content. List members are > > reminded of > > > their responsibility to evaluate the content of the postings and > > consult > > > with their physicians regarding changes in their own treatment. > > > > > > > > Personal attacks are not permitted on the list and anyone who > > sends one is > > > automatically moderated or removed depending on the severity of the > > attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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