Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Hi Dawn, I just had to put my two cents in on this one Please, please do not take anything that contains ephedra, mah juang (same thing) All it does is speed up your heart rate, yes you can lose weight because you can't sit down and do nothing BUT it can also cause death. I have taken it once and I really didn't like the effect it had on me, I'd rather be overweight. I even got heart pains. Really scary stuff and it is NOT safe, no matter what the botte says. Hugs, Sherri > > Reply-To: > Date: Wed, 31 Jul 2002 18:20:06 -0000 > To: > Subject: Re: beach ball with knees > > Hi Janet, > > I realized that anti-depressants caused weight gain well before I > began to take them. He seems to think I may be compulsive about > food??? I don't think I am....I just eat at the wrong things and at > the wrong time of the day because of my work schedule. (I am however > compulsive about ebay which is another story) So many people seem to > be losing weight at my workplace that I think that there must be > something that works out there? (these people are lazy....I KNOW > they aren't exersizing!) > > I wonder if you can take diet aids like metabolife along with > prozac? If you read antidepression brochures one of the side > effects is loss of appetite? How misleading! I have been off the > last three days.....I know they don't understand. I am sure I will > be losing my job in time. > > beachball with hopes, > Dawn > >> Usually, one of the major reasons for gaining weight (or so I've > been told >> and experienced for myself) is the anti-depressants. That's one > of the side >> effects that the ddoctor may not tell you about. They know none > of us want >> to gain any more weight, so they seem to neglect that little > tidbit. >> >> It also depends on what other meds you might be on. The doctor > finally told >> my mom that because she was taking multiple meds (for Diabetes and >> Arthritis) that was causing her weight gain as well. >> >> Janet >> >> -- beach ball with knees >> >> Hi, >> >> My doctor doubled my dosage of meds today......depression seems > to >> be hitting me like a brick wall. I have gained twelve more pounds >> since I've seen him last which wasn't that long ago. Whats a girl >> to do? Anyone having terrible problems gaining weight with this >> disease? I went to shave my legs today to find another set of >> knees growing beneath the ones I already have! >> >> >> feeling like a beach ball, >> Dawn >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 --- This is very true! It's killed many a supposedly healthy adults. In @y..., Sherri B wrote: > Hi Dawn, I just had to put my two cents in on this one Please, please do > not take anything that contains ephedra, mah juang (same thing) All it does > is speed up your heart rate, yes you can lose weight because you can't sit > down and do nothing BUT it can also cause death. I have taken it once and I > really didn't like the effect it had on me, I'd rather be overweight. I > even got heart pains. Really scary stuff and it is NOT safe, no matter what > the botte says. > > Hugs, > Sherri > > > From: " mythreedogsnme " > > Reply-To: @y... > > Date: Wed, 31 Jul 2002 18:20:06 -0000 > > To: @y... > > Subject: Re: beach ball with knees > > > > Hi Janet, > > > > I realized that anti-depressants caused weight gain well before I > > began to take them. He seems to think I may be compulsive about > > food??? I don't think I am....I just eat at the wrong things and at > > the wrong time of the day because of my work schedule. (I am however > > compulsive about ebay which is another story) So many people seem to > > be losing weight at my workplace that I think that there must be > > something that works out there? (these people are lazy....I KNOW > > they aren't exersizing!) > > > > I wonder if you can take diet aids like metabolife along with > > prozac? If you read antidepression brochures one of the side > > effects is loss of appetite? How misleading! I have been off the > > last three days.....I know they don't understand. I am sure I will > > be losing my job in time. > > > > beachball with hopes, > > Dawn > > > >> Usually, one of the major reasons for gaining weight (or so I've > > been told > >> and experienced for myself) is the anti-depressants. That's one > > of the side > >> effects that the ddoctor may not tell you about. They know none > > of us want > >> to gain any more weight, so they seem to neglect that little > > tidbit. > >> > >> It also depends on what other meds you might be on. The doctor > > finally told > >> my mom that because she was taking multiple meds (for Diabetes and > >> Arthritis) that was causing her weight gain as well. > >> > >> Janet > >> > >> -- beach ball with knees > >> > >> Hi, > >> > >> My doctor doubled my dosage of meds today......depression seems > > to > >> be hitting me like a brick wall. I have gained twelve more pounds > >> since I've seen him last which wasn't that long ago. Whats a girl > >> to do? Anyone having terrible problems gaining weight with this > >> disease? I went to shave my legs today to find another set of > >> knees growing beneath the ones I already have! > >> > >> > >> feeling like a beach ball, > >> Dawn > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 --- This is very true! It's killed many a supposedly healthy adults. In @y..., Sherri B wrote: > Hi Dawn, I just had to put my two cents in on this one Please, please do > not take anything that contains ephedra, mah juang (same thing) All it does > is speed up your heart rate, yes you can lose weight because you can't sit > down and do nothing BUT it can also cause death. I have taken it once and I > really didn't like the effect it had on me, I'd rather be overweight. I > even got heart pains. Really scary stuff and it is NOT safe, no matter what > the botte says. > > Hugs, > Sherri > > > From: " mythreedogsnme " > > Reply-To: @y... > > Date: Wed, 31 Jul 2002 18:20:06 -0000 > > To: @y... > > Subject: Re: beach ball with knees > > > > Hi Janet, > > > > I realized that anti-depressants caused weight gain well before I > > began to take them. He seems to think I may be compulsive about > > food??? I don't think I am....I just eat at the wrong things and at > > the wrong time of the day because of my work schedule. (I am however > > compulsive about ebay which is another story) So many people seem to > > be losing weight at my workplace that I think that there must be > > something that works out there? (these people are lazy....I KNOW > > they aren't exersizing!) > > > > I wonder if you can take diet aids like metabolife along with > > prozac? If you read antidepression brochures one of the side > > effects is loss of appetite? How misleading! I have been off the > > last three days.....I know they don't understand. I am sure I will > > be losing my job in time. > > > > beachball with hopes, > > Dawn > > > >> Usually, one of the major reasons for gaining weight (or so I've > > been told > >> and experienced for myself) is the anti-depressants. That's one > > of the side > >> effects that the ddoctor may not tell you about. They know none > > of us want > >> to gain any more weight, so they seem to neglect that little > > tidbit. > >> > >> It also depends on what other meds you might be on. The doctor > > finally told > >> my mom that because she was taking multiple meds (for Diabetes and > >> Arthritis) that was causing her weight gain as well. > >> > >> Janet > >> > >> -- beach ball with knees > >> > >> Hi, > >> > >> My doctor doubled my dosage of meds today......depression seems > > to > >> be hitting me like a brick wall. I have gained twelve more pounds > >> since I've seen him last which wasn't that long ago. Whats a girl > >> to do? Anyone having terrible problems gaining weight with this > >> disease? I went to shave my legs today to find another set of > >> knees growing beneath the ones I already have! > >> > >> > >> feeling like a beach ball, > >> Dawn > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 --- This is very true! It's killed many a supposedly healthy adults. In @y..., Sherri B wrote: > Hi Dawn, I just had to put my two cents in on this one Please, please do > not take anything that contains ephedra, mah juang (same thing) All it does > is speed up your heart rate, yes you can lose weight because you can't sit > down and do nothing BUT it can also cause death. I have taken it once and I > really didn't like the effect it had on me, I'd rather be overweight. I > even got heart pains. Really scary stuff and it is NOT safe, no matter what > the botte says. > > Hugs, > Sherri > > > From: " mythreedogsnme " > > Reply-To: @y... > > Date: Wed, 31 Jul 2002 18:20:06 -0000 > > To: @y... > > Subject: Re: beach ball with knees > > > > Hi Janet, > > > > I realized that anti-depressants caused weight gain well before I > > began to take them. He seems to think I may be compulsive about > > food??? I don't think I am....I just eat at the wrong things and at > > the wrong time of the day because of my work schedule. (I am however > > compulsive about ebay which is another story) So many people seem to > > be losing weight at my workplace that I think that there must be > > something that works out there? (these people are lazy....I KNOW > > they aren't exersizing!) > > > > I wonder if you can take diet aids like metabolife along with > > prozac? If you read antidepression brochures one of the side > > effects is loss of appetite? How misleading! I have been off the > > last three days.....I know they don't understand. I am sure I will > > be losing my job in time. > > > > beachball with hopes, > > Dawn > > > >> Usually, one of the major reasons for gaining weight (or so I've > > been told > >> and experienced for myself) is the anti-depressants. That's one > > of the side > >> effects that the ddoctor may not tell you about. They know none > > of us want > >> to gain any more weight, so they seem to neglect that little > > tidbit. > >> > >> It also depends on what other meds you might be on. The doctor > > finally told > >> my mom that because she was taking multiple meds (for Diabetes and > >> Arthritis) that was causing her weight gain as well. > >> > >> Janet > >> > >> -- beach ball with knees > >> > >> Hi, > >> > >> My doctor doubled my dosage of meds today......depression seems > > to > >> be hitting me like a brick wall. I have gained twelve more pounds > >> since I've seen him last which wasn't that long ago. Whats a girl > >> to do? Anyone having terrible problems gaining weight with this > >> disease? I went to shave my legs today to find another set of > >> knees growing beneath the ones I already have! > >> > >> > >> feeling like a beach ball, > >> Dawn > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Hi Sherri, I know your right....but its so frustrating!! I am gaining weight so rapidly that I am the source of peoples amusment at work these days. My walk is turning into a waddle....I just want to cry. I am very short and that makes things even worse along with the fibro symtoms......don't you just feel like hiding sometimes? I sure do. sincerely, Dawn > >> Usually, one of the major reasons for gaining weight (or so I've > > been told > >> and experienced for myself) is the anti-depressants. That's one > > of the side > >> effects that the ddoctor may not tell you about. They know none > > of us want > >> to gain any more weight, so they seem to neglect that little > > tidbit. > >> > >> It also depends on what other meds you might be on. The doctor > > finally told > >> my mom that because she was taking multiple meds (for Diabetes and > >> Arthritis) that was causing her weight gain as well. > >> > >> Janet > >> > >> -- beach ball with knees > >> > >> Hi, > >> > >> My doctor doubled my dosage of meds today......depression seems > > to > >> be hitting me like a brick wall. I have gained twelve more pounds > >> since I've seen him last which wasn't that long ago. Whats a girl > >> to do? Anyone having terrible problems gaining weight with this > >> disease? I went to shave my legs today to find another set of > >> knees growing beneath the ones I already have! > >> > >> > >> feeling like a beach ball, > >> Dawn > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Hi Sherri, I know your right....but its so frustrating!! I am gaining weight so rapidly that I am the source of peoples amusment at work these days. My walk is turning into a waddle....I just want to cry. I am very short and that makes things even worse along with the fibro symtoms......don't you just feel like hiding sometimes? I sure do. sincerely, Dawn > >> Usually, one of the major reasons for gaining weight (or so I've > > been told > >> and experienced for myself) is the anti-depressants. That's one > > of the side > >> effects that the ddoctor may not tell you about. They know none > > of us want > >> to gain any more weight, so they seem to neglect that little > > tidbit. > >> > >> It also depends on what other meds you might be on. The doctor > > finally told > >> my mom that because she was taking multiple meds (for Diabetes and > >> Arthritis) that was causing her weight gain as well. > >> > >> Janet > >> > >> -- beach ball with knees > >> > >> Hi, > >> > >> My doctor doubled my dosage of meds today......depression seems > > to > >> be hitting me like a brick wall. I have gained twelve more pounds > >> since I've seen him last which wasn't that long ago. Whats a girl > >> to do? Anyone having terrible problems gaining weight with this > >> disease? I went to shave my legs today to find another set of > >> knees growing beneath the ones I already have! > >> > >> > >> feeling like a beach ball, > >> Dawn > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Hi Sherri, I know your right....but its so frustrating!! I am gaining weight so rapidly that I am the source of peoples amusment at work these days. My walk is turning into a waddle....I just want to cry. I am very short and that makes things even worse along with the fibro symtoms......don't you just feel like hiding sometimes? I sure do. sincerely, Dawn > >> Usually, one of the major reasons for gaining weight (or so I've > > been told > >> and experienced for myself) is the anti-depressants. That's one > > of the side > >> effects that the ddoctor may not tell you about. They know none > > of us want > >> to gain any more weight, so they seem to neglect that little > > tidbit. > >> > >> It also depends on what other meds you might be on. The doctor > > finally told > >> my mom that because she was taking multiple meds (for Diabetes and > >> Arthritis) that was causing her weight gain as well. > >> > >> Janet > >> > >> -- beach ball with knees > >> > >> Hi, > >> > >> My doctor doubled my dosage of meds today......depression seems > > to > >> be hitting me like a brick wall. I have gained twelve more pounds > >> since I've seen him last which wasn't that long ago. Whats a girl > >> to do? Anyone having terrible problems gaining weight with this > >> disease? I went to shave my legs today to find another set of > >> knees growing beneath the ones I already have! > >> > >> > >> feeling like a beach ball, > >> Dawn > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 You are 100% correct on that one. Bad stuff in there! It is medically used as a bronchiodialator on asthma patients. If not taken responsibly it can cause cardiac arrest. Missy > Please, please do > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Kickbacks and lots of freebies. I try to keep this in mind when I am at the doctor. Missy > I know he is pushing paxil....saw the brochures and freebees in > his sitting room. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Kickbacks and lots of freebies. I try to keep this in mind when I am at the doctor. Missy > I know he is pushing paxil....saw the brochures and freebees in > his sitting room. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Kickbacks and lots of freebies. I try to keep this in mind when I am at the doctor. Missy > I know he is pushing paxil....saw the brochures and freebees in > his sitting room. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Sherri, Thanks so much....you are so sweet to understand. I did mention wellbutrin to my doctor yesterday but he says he hasn't seen any success using it and wouldn't give it to me. I may try again when I go back to see him next month....he is a friend....maybe I could convince him?? I can't see what it would hurt. I know he is pushing paxil....saw the brochures and freebees in his sitting room. Wonder what they get for that? I wish I were seventy five pounds overweight. I have ballooned in the past seven years from 106 to 222!! 50 of it has just piled on in the last few months.....if I gain another pound I am going to scream! I was searching through the diets and saw one called potatoes not prozac.....I guess its a high protien diet...not sure....I bought the book anyway at half.com for three bucks.....got nothing to lose. You are soooo lucky to be able to stay at home!! I am stuck at a job I hate with a bunch of overgrown thirteen year olds! Let me know if you find anything else that works.....wish we lived near eachother so we could do lunch! Have a great day! Dawn > > Dawn, I am sooo sorry about what you are going through. I, myself, am about > 75 lbs overweight and I am 5'3 " . I heard someone talking about Wellbutrin > helps you lose weight (and also quit smoking, same as zyban) I have really > thought about trying that one. I don't work but I am embarassed when I go > out in public. My family is very supportive, especially my 16 y/o daughter. > Must have done something right, LOL! But it still hurts, I know. My Dr > keeps telling me to stop eating and exercise and she knows that I have a > hard time exercising!! I don't eat as much now as I did 10 years ago. I > used to eat like a pig and never gain weight. Was that way until I got > pregnant almost 6 years ago. > > Please, try to talk to your dr about wellbutrin. So many people have lost > weight on it. It might work. > > My heart is with you!! > Sherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 Hi Dawn, Is the Mayo doctor a specialist in mito? Your symptoms are almost exactly like mine and I have a mito diagnosis. I go to Dr. Cohen at the Cleveland Clinic. My muscles react as yours does and I have the same gait problem. I have also had problems with dizziness as Lea wrote about. I wondered if it was due to all the medicine, though that seems unlikely because I take the meds all the time and the dizziness just happens off and on. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 --- RH, Thank you so much for sharing. It feeds my fire to hear others stories. I have seen some good neurologists too. Did you have a frozen biopsy or did you go straight for the fresh? That was my paln but I surcoombed to the Drs here and took the short cut. Now I am paying for it. Good for you not listening to what they told you. All my labs are normal, except my Co Q 10, creatine and thiamine are all low. I do plan on going for a fresh biopsy. I would just like to have a little more clinical evidence to justify it. I can not imagine a Dr referring me to Dr Shoeffner at the moment. I have had two mito Drs tell me it is not mito with in the past few months.. Maybe pushing myself physically will show more evidence. Right now I monitor myself to avoid crashes. Maybe I need to stop clouding the picture. I like your style. Taking a family vaction and getting your biopsy done. Sounds like me killing two birds with one stone. Making the best ot things and the most of your money. YOu go girl! I am glad you got answers. Dawn A In , " ohgminion " wrote: > > Some of the doctors who said my symptoms were " all in your head " > and " nothing's wrong with you " were also neuromuscular disease > experts. One guy was ranked as one of the top 100 neurologists in > the country, consistently winning " best doctor at this hospital " > awards. > > I hear you on the " doer " versus " waiter " - that's why I decided to > get the fresh muscle biopsy - it's all talk until the definitive > testing is done. I was pregnant and dragged my two kids and husband > 1,000 miles when I got the testing done - I'd do it again in a > minute. (I am not a doctor, this isn't medical advice, etc., etc.) > > Having given such a glowing view of my fresh muscle biopsy testing, I > wonder - has anyone been UNhappy about their fresh muscle biopsy > testing, either the experience or the results? I have to say I > chickened out of the spinal tap they tried to do at the same time as > the muscle biopsy, but part of that was to confirm or deny MS, and > since the mito testing results were squirrely, they are pretty sure I > don't have MS. > > Take care, > RH > > > > > > > > Hi Dawn, > > > Is the Mayo doctor a specialist in mito? Your symptoms are > > almost > > > exactly like mine and I have a mito diagnosis. I go to Dr. Cohen > > at > > > the Cleveland Clinic. > > > My muscles react as yours does and I have the same gait > problem. > > > I have also had problems with dizziness as Lea wrote about. I > > > wondered if it was due to all the medicine, though that seems > > > unlikely because I take the meds all the time and the dizziness > > just > > > happens off and on. > > > Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 Dawn, You may want to get a small notebook that you can carry in your purse. When you have a symptom, write it down and if possible what you had done before that which may have brought the symptom on. Take the notebook with you to your doctor appointments. Log symptoms that seem like they aren't related to the other symptoms too. It wasn't until a doctor saw ALL the weird symptoms written down together that I was sent for a fresh biopsy after many frozen ones that showed conflicting results. Hang in there. It took me 10 years. dawnanich wrote: >--- Hi Debbie, Yes this was a mito Dr and I feel he is very good. He >admitted to not be very knowledgable about Adults. What mito Dr is? >Go figure that my symptoms were mild when I saw the neurologist. > >So much of this is muscular. I wish I would of spoke up more and >showed the Dr how my muscles tremor. You can not see that with a >gown on that reaches your ankles. I did not do a very good job of >communicating my problems during the appointment and now I am >beating myself up for it. > >All I know is that my muscles are one of my biggest problems and I >do not think that is autoimmune. I guess I just need to wait things >out for a while. But that is not my personality. I am a doer, not a >person who waits. > >Dawn Anich > >In , " dsm322 " wrote: > > >>Hi Dawn, >> Is the Mayo doctor a specialist in mito? Your symptoms are >> >> >almost > > >>exactly like mine and I have a mito diagnosis. I go to Dr. Cohen >> >> >at > > >>the Cleveland Clinic. >> My muscles react as yours does and I have the same gait problem. >>I have also had problems with dizziness as Lea wrote about. I >>wondered if it was due to all the medicine, though that seems >>unlikely because I take the meds all the time and the dizziness >> >> >just > > >>happens off and on. >>Debbie >> >> > > > > > > >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 February 18, 2005 Report Share Posted February 18, 2005 Dawn, You may want to get a small notebook that you can carry in your purse. When you have a symptom, write it down and if possible what you had done before that which may have brought the symptom on. Take the notebook with you to your doctor appointments. Log symptoms that seem like they aren't related to the other symptoms too. It wasn't until a doctor saw ALL the weird symptoms written down together that I was sent for a fresh biopsy after many frozen ones that showed conflicting results. Hang in there. It took me 10 years. dawnanich wrote: >--- Hi Debbie, Yes this was a mito Dr and I feel he is very good. He >admitted to not be very knowledgable about Adults. What mito Dr is? >Go figure that my symptoms were mild when I saw the neurologist. > >So much of this is muscular. I wish I would of spoke up more and >showed the Dr how my muscles tremor. You can not see that with a >gown on that reaches your ankles. I did not do a very good job of >communicating my problems during the appointment and now I am >beating myself up for it. > >All I know is that my muscles are one of my biggest problems and I >do not think that is autoimmune. I guess I just need to wait things >out for a while. But that is not my personality. I am a doer, not a >person who waits. > >Dawn Anich > >In , " dsm322 " wrote: > > >>Hi Dawn, >> Is the Mayo doctor a specialist in mito? Your symptoms are >> >> >almost > > >>exactly like mine and I have a mito diagnosis. I go to Dr. Cohen >> >> >at > > >>the Cleveland Clinic. >> My muscles react as yours does and I have the same gait problem. >>I have also had problems with dizziness as Lea wrote about. I >>wondered if it was due to all the medicine, though that seems >>unlikely because I take the meds all the time and the dizziness >> >> >just > > >>happens off and on. >>Debbie >> >> > > > > > > >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 February 18, 2005 Report Share Posted February 18, 2005 No problem. I am lucky, my mito doc is a neuro at the MDA clinic in town, PA, and she basically said " I think it is oxphos, so you need to go to Georgia " . I did go to a doctor at C-P in NYC (much closer to my home), and he wanted to do the biopsy, but I wasn't convinced that they were equipped at the time (they were changing muscle biopsy procedures). We took the AutoTrain to Florida, then visited my inlaws and went to Disneyworld. Then we drove up to Atlanta, had a pre-op visit (pre-op blood tests were done locally for me), and had the muscle biopsy the next day. I remember my husband going out with my older son to pick up chili dogs for me while I was recuperating at the hotel, before we drove home. The office visit was at a children's clinic, and the surgery ended up being at a " regular " hospital, although they went through scheduling at a children's hospital then changed their minds. I have a strange presentation, even for mito, but one of the breakthroughs is when they realized my symptoms occur hundreds of times per day, although only for minutes at a time. I am also able to participate in strenuous exercise, yet not light exercise. I think my description of my symptoms led to the lactate/pyruvate testing, and then the diagnosis, which was confirmed by the fresh muscle biopsy. Take care, RH > > > > > > > > Hi Dawn, > > > > Is the Mayo doctor a specialist in mito? Your symptoms are > > > almost > > > > exactly like mine and I have a mito diagnosis. I go to Dr. > Cohen > > > at > > > > the Cleveland Clinic. > > > > My muscles react as yours does and I have the same gait > > problem. > > > > I have also had problems with dizziness as Lea wrote about. I > > > > wondered if it was due to all the medicine, though that seems > > > > unlikely because I take the meds all the time and the > dizziness > > > just > > > > happens off and on. > > > > Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 No problem. I am lucky, my mito doc is a neuro at the MDA clinic in town, PA, and she basically said " I think it is oxphos, so you need to go to Georgia " . I did go to a doctor at C-P in NYC (much closer to my home), and he wanted to do the biopsy, but I wasn't convinced that they were equipped at the time (they were changing muscle biopsy procedures). We took the AutoTrain to Florida, then visited my inlaws and went to Disneyworld. Then we drove up to Atlanta, had a pre-op visit (pre-op blood tests were done locally for me), and had the muscle biopsy the next day. I remember my husband going out with my older son to pick up chili dogs for me while I was recuperating at the hotel, before we drove home. The office visit was at a children's clinic, and the surgery ended up being at a " regular " hospital, although they went through scheduling at a children's hospital then changed their minds. I have a strange presentation, even for mito, but one of the breakthroughs is when they realized my symptoms occur hundreds of times per day, although only for minutes at a time. I am also able to participate in strenuous exercise, yet not light exercise. I think my description of my symptoms led to the lactate/pyruvate testing, and then the diagnosis, which was confirmed by the fresh muscle biopsy. Take care, RH > > > > > > > > Hi Dawn, > > > > Is the Mayo doctor a specialist in mito? Your symptoms are > > > almost > > > > exactly like mine and I have a mito diagnosis. I go to Dr. > Cohen > > > at > > > > the Cleveland Clinic. > > > > My muscles react as yours does and I have the same gait > > problem. > > > > I have also had problems with dizziness as Lea wrote about. I > > > > wondered if it was due to all the medicine, though that seems > > > > unlikely because I take the meds all the time and the > dizziness > > > just > > > > happens off and on. > > > > Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2005 Report Share Posted February 19, 2005 Hi Dawn, I was born in Lansdale Pa and lived in North Wales Pa I think it's about 25 miles outside of Philly. I have met quite a few people from Pa. I now live in Cleveland Ohio big change lol. I was wondering how are the MDA doctors as my son and I are going to go . Hugs, Donna ---- ohgminion rakshasis@...> wrote: > > > No problem. I am lucky, my mito doc is a neuro at the MDA clinic in > town, PA, and she basically said " I think it is oxphos, so you > need to go to Georgia " . I did go to a doctor at C-P in NYC (much > closer to my home), and he wanted to do the biopsy, but I wasn't > convinced that they were equipped at the time (they were changing > muscle biopsy procedures). > > We took the AutoTrain to Florida, then visited my inlaws and went to > Disneyworld. Then we drove up to Atlanta, had a pre-op visit (pre-op > blood tests were done locally for me), and had the muscle biopsy the > next day. I remember my husband going out with my older son to pick > up chili dogs for me while I was recuperating at the hotel, before we > drove home. > > The office visit was at a children's clinic, and the surgery ended up > being at a " regular " hospital, although they went through scheduling > at a children's hospital then changed their minds. > > I have a strange presentation, even for mito, but one of the > breakthroughs is when they realized my symptoms occur hundreds of > times per day, although only for minutes at a time. I am also able > to participate in strenuous exercise, yet not light exercise. I > think my description of my symptoms led to the lactate/pyruvate > testing, and then the diagnosis, which was confirmed by the fresh > muscle biopsy. > > Take care, > RH > > > > > > > > > > > > > Hi Dawn, > > > > > Is the Mayo doctor a specialist in mito? Your symptoms are > > > > almost > > > > > exactly like mine and I have a mito diagnosis. I go to Dr. > > Cohen > > > > at > > > > > the Cleveland Clinic. > > > > > My muscles react as yours does and I have the same gait > > > problem. > > > > > I have also had problems with dizziness as Lea wrote about. I > > > > > wondered if it was due to all the medicine, though that seems > > > > > unlikely because I take the meds all the time and the > > dizziness > > > > just > > > > > happens off and on. > > > > > Debbie > > > > > > > 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 February 19, 2005 Report Share Posted February 19, 2005 Hi Dawn, I was born in Lansdale Pa and lived in North Wales Pa I think it's about 25 miles outside of Philly. I have met quite a few people from Pa. I now live in Cleveland Ohio big change lol. I was wondering how are the MDA doctors as my son and I are going to go . Hugs, Donna ---- ohgminion rakshasis@...> wrote: > > > No problem. I am lucky, my mito doc is a neuro at the MDA clinic in > town, PA, and she basically said " I think it is oxphos, so you > need to go to Georgia " . I did go to a doctor at C-P in NYC (much > closer to my home), and he wanted to do the biopsy, but I wasn't > convinced that they were equipped at the time (they were changing > muscle biopsy procedures). > > We took the AutoTrain to Florida, then visited my inlaws and went to > Disneyworld. Then we drove up to Atlanta, had a pre-op visit (pre-op > blood tests were done locally for me), and had the muscle biopsy the > next day. I remember my husband going out with my older son to pick > up chili dogs for me while I was recuperating at the hotel, before we > drove home. > > The office visit was at a children's clinic, and the surgery ended up > being at a " regular " hospital, although they went through scheduling > at a children's hospital then changed their minds. > > I have a strange presentation, even for mito, but one of the > breakthroughs is when they realized my symptoms occur hundreds of > times per day, although only for minutes at a time. I am also able > to participate in strenuous exercise, yet not light exercise. I > think my description of my symptoms led to the lactate/pyruvate > testing, and then the diagnosis, which was confirmed by the fresh > muscle biopsy. > > Take care, > RH > > > > > > > > > > > > > Hi Dawn, > > > > > Is the Mayo doctor a specialist in mito? Your symptoms are > > > > almost > > > > > exactly like mine and I have a mito diagnosis. I go to Dr. > > Cohen > > > > at > > > > > the Cleveland Clinic. > > > > > My muscles react as yours does and I have the same gait > > > problem. > > > > > I have also had problems with dizziness as Lea wrote about. I > > > > > wondered if it was due to all the medicine, though that seems > > > > > unlikely because I take the meds all the time and the > > dizziness > > > > just > > > > > happens off and on. > > > > > Debbie > > > > > > > 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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