Guest guest Posted September 13, 2005 Report Share Posted September 13, 2005 A general comment is that mito can cause problems with *any* body system. Also, although many of us have general weakness and fatigue, there are many symptoms that some of us have but other do not. It's difficult if not impossible to predict which set of symptoms we'll end up with individually. An example is ptosis and double vision - I have it, and some people on this list do as well, but others do not, and will probably never get it. My hearing seems okay, and I don't have cardiomyopathy, but other have those issues. I think the general concern is that " if I have mito and these other people have mito and additional symptoms, I'll eventually get those symptoms " . I really don't think this is the case with mito, even less so than other types of diseases. That being said, it seems that many of us find that general conservation of energy, along with one or more of the mito cocktail list of supplements and medications, and a careful diet can help. YMMV, IANAMD (I am not a medical doctor), but I wouldn't treat the symptom as much as try to figure out if mito is causing it, and try to treat that. But it does sound like you are having general problems, maybe the respiratory support will help. Regarding menopause, see my above comments - some of us have certain sets of symptoms, others do not. Mito(chondrial disease) is *NOT* one disease, I've seen some post about early menopause, but others do not have that issue. There was a thread a few months back about " don't blame mito for everything " . Any endocrine issue should be addressed with your endocrinologist or if it is reproductive your gynecologist. My mito doc recommends going to specialists in the area of the symptom. For example, my medications for high blood ammonia are from my GI doctor, because that symptom is usually caused by liver disease (which I don't have), but the treatments for the high ammonia still help tremendously. In essence they don't care if it is from mito or not, the treatment is the same. BTW, my (non-mito) friend thought she was going through early menopause at 38 (lost hair, hot and cold flashes, irregular cycles), but ended up getting pregnant a few months after that, so be careful LOL! Her daughter is 3 months old now Take care, RH > Dear Roomies- > > This go round with Mito is quite puzzling and VERY frustrating. I cannot talk in my normal tone as my voice sounds > raspy and shallow. Trying hard not to move around alot for fear of depleting what little energy I have stored in my > reserves. Calling tomorrow to set up time for bipap to be delivered, used one before and it helped greatly. > > This onset is so rapid that I hardly have a moment's break before a new symptom pushes itself out in the forefront. My > new internal med dr is trying to fit me in his schedule this week. ly I am scared as my progression is happening > so fast. My body has rocked for about half the day. Perhaps I shouldn't complain as I know my symptoms aren't as bad > as some out there. > > I also have a feminine question to ask. Does Mito make a woman go through menopause before 40? I would like to talk > privately about this, if someone has ideas. Thanks. > > I am starting to have tremors in my head again, better close this for now. > Thanks in advance. > > Hugs > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 Hi Ann - I had menopause at 35. My doctors all thought it was to do with my hypothyroidism which I had from age 13, but now it looks as though they could both be to do with mito (I have heard another person ask the same question - think it was on Ask the Mito Doc). Pamela (pamelama33@...) New symptoms Dear Roomies- This go round with Mito is quite puzzling and VERY frustrating. I cannot talk in my normal tone as my voice sounds raspy and shallow. Trying hard not to move around alot for fear of depleting what little energy I have stored in my reserves. Calling tomorrow to set up time for bipap to be delivered, used one before and it helped greatly. This onset is so rapid that I hardly have a moment's break before a new symptom pushes itself out in the forefront. My new internal med dr is trying to fit me in his schedule this week. ly I am scared as my progression is happening so fast. My body has rocked for about half the day. Perhaps I shouldn't complain as I know my symptoms aren't as bad as some out there. I also have a feminine question to ask. Does Mito make a woman go through menopause before 40? I would like to talk privately about this, if someone has ideas. Thanks. I am starting to have tremors in my head again, better close this for now. Thanks in advance. Hugs Ann 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 March 8, 2007 Report Share Posted March 8, 2007 I have some new neuro symptoms, just wondered if any of you have experience these. I saw a neurologist for some increase nerve pain, the Lyceria is helping a lot, anyway, a visit to a local neuro, showed on my neuro exam that I can not lift my L. leg up off the chair, R leg no problem, I can not curl my L toes forward, but can on the right, and I can not life my whole L leg up while laying flat down. I find myself dragging my left foot when I get tired. They also found my sinuses to be full of something, maybe just scarring? Sent me to an ENT, the man spent 5 mins with me, would not look at the MRI I just had done which showed the “stuff” in the sinuses, which is why the neuro sent me to him, well he told me I had NS, ok duh, then asked a few questions about my breathing related to my nose which is fine, looked in my mouth, up my nose (I’m sure that’s a nice view) one of those Kodak momentsJ, anyway then said I needed a CT scan of the sinuses, I asked if he looked at the MRI, he says NO don’t need to, wont tell me anything, I need a CT, when I questioned why he couldn’t at least look at the MRI first, he started to talk down to me, like, this is the nose and in the nose you have these holes, OK now I’m getting a little put out, so I said, I know those little holes are called windows, and then told him that I am an RN (OK retired, but still give me a break), then he got up and walked out saying you need a CT scan, sat me down in a chair in the hall and told me his assistance will schedule. So I did, but then after I left and started thinking about it, I got mad, I canceled the CT until I can see my Pulmonologist and talk to him. I don’t have an infection so what’s the big deal? Back to the neuro he said I have micro granulomas in my brain and probably spinal cord. And that I need to be on the highest auto immune drugs my body can handle, so I don’t get worse, probably won’t get better. So do any of you have these neuro symptoms? Just wondering, and what about the sinus, anyone have trouble there are need surgery there, after working for ENT’s I really don’t want sinus surgery! Just curious, as always you are all in my prayers, I know everyone is struggling these days, and I’m sorry you are, but you are thought of each day, of course for some reason my thoughts are of “Dancing” strange, wonder where that thought came fromJ love you all, have a better then “normal” day. Marla Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Marla, I had a cat scan and a hearing test to see what was happening in my sinuses, parotid glands, etc. My ENT said I had nasal 'thickening'and I had to switch up my nasal spray to a steroid spray cuz my eustation tubes were also thickened. I would get terrible earaches cuz they would stop up. The nurse had also told me I had a slight disease in my sinuses but I forgot to ask the doc what that was. Anyway I was already on everything I could have taken for it. He did say sarcoid could be causing all these symptoms. I am not or never was in the medical profession and have no idea what the difference is between an mri and a cat scan. Sometimes you have to see jerks, but only if they are actually helpful in treatment. A nice doc who doesn't really help you isn't worth much either. Too bad we can't all find nice docs who know what they are doing. I suppose if they biopsied the growths in your sinuses they'd know for sure. But I'd bet your bottom dollar it's sarc! I hope your leg problems get better. I have troubles with mine but they aren't too bad yet. My fatigue is out the roof though. And I'm still suffering with chest pain. ...fun, fun, fun. hugs S.Marla Bramer wrote: I have some new neuro symptoms, just wondered if any of you have experience these. I saw a neurologist for some increase nerve pain, the Lyceria is helping a lot, anyway, a visit to a local neuro, showed on my neuro exam that I can not lift my L. leg up off the chair, R leg no problem, I can not curl my L toes forward, but can on the right, and I can not life my whole L leg up while laying flat down. I find myself dragging my left foot when I get tired. They also found my sinuses to be full of something, maybe just scarring? Sent me to an ENT, the man spent 5 mins with me, would not look at the MRI I just had done which showed the “stuff” in the sinuses, which is why the neuro sent me to him, well he told me I had NS, ok duh, then asked a few questions about my breathing related to my nose which is fine, looked in my mouth, up my nose (I’m sure that’s a nice view) one of those Kodak momentsJ, anyway then said I needed a CT scan of the sinuses, I asked if he looked at the MRI, he says NO don’t need to, wont tell me anything, I need a CT, when I questioned why he couldn’t at least look at the MRI first, he started to talk down to me, like, this is the nose and in the nose you have these holes, OK now I’m getting a little put out, so I said, I know those little holes are called windows, and then told him that I am an RN (OK retired, but still give me a break), then he got up and walked out saying you need a CT scan, sat me down in a chair in the hall and told me his assistance will schedule. So I did, but then after I left and started thinking about it, I got mad, I canceled the CT until I can see my Pulmonologist and talk to him. I don’t have an infection so what’s the big deal? Back to the neuro he said I have micro granulomas in my brain and probably spinal cord. And that I need to be on the highest auto immune drugs my body can handle, so I don’t get worse, probably won’t get better. So do any of you have these neuro symptoms? Just wondering, and what about the sinus, anyone have trouble there are need surgery there, after working for ENT’s I really don’t want sinus surgery! Just curious, as always you are all in my prayers, I know everyone is struggling these days, and I’m sorry you are, but you are thought of each day, of course for some reason my thoughts are of “Dancing” strange, wonder where that thought came fromJ love you all, have a better then “normal” day. Marla Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" Finding fabulous fares is fun.Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Hi , An MIR shows tissue better, and a CT shows bone better. But I still see no reason for a CT, the Doc said it’s probably just a result of the Sarcoid, so we probably won’t do a thing, so I prefer to let it go, if it’s not broke don’t fix it, I have a sinus infection about twice a year, who doesn’t? I’m sorry to hear you have so much pain, I know how that can really get you down, my pain isn’t too bad, and the limitations are not that bad either, if I do too much it’s worse so I pace myself and that works for me. I will keep you in my prayers that your pain gets better. Marla Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Solberg Sent: Friday, March 09, 2007 7:26 AM To: Neurosarcoidosis Subject: Re: new symptoms Marla, I had a cat scan and a hearing test to see what was happening in my sinuses, parotid glands, etc. My ENT said I had nasal 'thickening'and I had to switch up my nasal spray to a steroid spray cuz my eustation tubes were also thickened. I would get terrible earaches cuz they would stop up. The nurse had also told me I had a slight disease in my sinuses but I forgot to ask the doc what that was. Anyway I was already on everything I could have taken for it. He did say sarcoid could be causing all these symptoms. I am not or never was in the medical profession and have no idea what the difference is between an mri and a cat scan. Sometimes you have to see jerks, but only if they are actually helpful in treatment. A nice doc who doesn't really help you isn't worth much either. Too bad we can't all find nice docs who know what they are doing. I suppose if they biopsied the growths in your sinuses they'd know for sure. But I'd bet your bottom dollar it's sarc! I hope your leg problems get better. I have troubles with mine but they aren't too bad yet. My fatigue is out the roof though. And I'm still suffering with chest pain. ...fun, fun, fun. hugs S. Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I have some new neuro symptoms, just wondered if any of you have experience these. I saw a neurologist for some increase nerve pain, the Lyceria is helping a lot, anyway, a visit to a local neuro, showed on my neuro exam that I can not lift my L. leg up off the chair, R leg no problem, I can not curl my L toes forward, but can on the right, and I can not life my whole L leg up while laying flat down. I find myself dragging my left foot when I get tired. They also found my sinuses to be full of something, maybe just scarring? Sent me to an ENT, the man spent 5 mins with me, would not look at the MRI I just had done which showed the “stuff” in the sinuses, which is why the neuro sent me to him, well he told me I had NS, ok duh, then asked a few questions about my breathing related to my nose which is fine, looked in my mouth, up my nose (I’m sure that’s a nice view) one of those Kodak momentsJ, anyway then said I needed a CT scan of the sinuses, I asked if he looked at the MRI, he says NO don’t need to, wont tell me anything, I need a CT, when I questioned why he couldn’t at least look at the MRI first, he started to talk down to me, like, this is the nose and in the nose you have these holes, OK now I’m getting a little put out, so I said, I know those little holes are called windows, and then told him that I am an RN (OK retired, but still give me a break), then he got up and walked out saying you need a CT scan, sat me down in a chair in the hall and told me his assistance will schedule. So I did, but then after I left and started thinking about it, I got mad, I canceled the CT until I can see my Pulmonologist and talk to him. I don’t have an infection so what’s the big deal? Back to the neuro he said I have micro granulomas in my brain and probably spinal cord. And that I need to be on the highest auto immune drugs my body can handle, so I don’t get worse, probably won’t get better. So do any of you have these neuro symptoms? Just wondering, and what about the sinus, anyone have trouble there are need surgery there, after working for ENT’s I really don’t want sinus surgery! Just curious, as always you are all in my prayers, I know everyone is struggling these days, and I’m sorry you are, but you are thought of each day, of course for some reason my thoughts are of “Dancing” strange, wonder where that thought came fromJ love you all, have a better then “normal” day. Marla Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " Finding fabulous fares is fun. Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Marla, I have Sarcoid in the sinuses.. and it can be a big problem especially this time of year, I start getting nose bleeds? why the spring I don't know but its happened this way the last 5 years. They treat it like sojergen's disease (sp) and they tell you to do the saline rinses, you can use white petroleum jelly in tiny bits to help prevent the cracking and bleeding.. if you have that problem.. but I too had to have a CT scan done, its weird they lay you down on your stomach and do the scan.. weird huh? He proabably didn't know how to read a MRI.. I had the ct scan then I had a gallium scan and that's what confrirmed the Sarc.. hope this helps. -- new symptoms I have some new neuro symptoms, just wondered if any of you have experience these. I saw a neurologist for some increase nerve pain, the Lyceria is helping a lot, anyway, a visit to a local neuro, showed on my neuro exam that I can not lift my L. leg up off the chair, R leg no problem, I can not curl my L toes forward, but can on the right, and I can not life my whole L leg up while laying flat down. I find myself dragging my left foot when I get tired. They also found my sinuses to be full of something, maybe just scarring? Sent me to an ENT, the man spent 5 mins with me, would not look at the MRI I just had done which showed the “stuff” in the sinuses, which is why the neuro sent me to him, well he told me I had NS, ok duh, then asked a few questions about my breathing related to my nose which is fine, looked in my mouth, up my nose (I’m sure that’s a nice view) one of those Kodak momentsJ, anyway then said I needed a CT scan of the sinuses, I asked if he looked at the MRI, he says NO don’t need to, wont tell me anything, I need a CT, when I questioned why he couldn’t at least look at the MRI first, he started to talk down to me, like, this is the nose and in the nose you have these holes, OK now I’m getting a little put out, so I said, I know those little holes are called windows, and then told him that I am an RN (OK retired, but still give me a break), then he got up and walked out saying you need a CT scan, sat me down in a chair in the hall and told me his assistance will schedule. So I did, but then after I left and started thinking about it, I got mad, I canceled the CT until I can see my Pulmonologist and talk to him. I don’t have an infection so what’s the big deal? Back to the neuro he said I have micro granulomas in my brain and probably spinal cord. And that I need to be on the highest auto immune drugs my body can handle, so I don’t get worse, probably won’t get better. So do any of you have these neuro symptoms? Just wondering, and what about the sinus, anyone have trouble there are need surgery there, after working for ENT’s I really don’t want sinus surgery! Just curious, as always you are all in my prayers, I know everyone is struggling these days, and I’m sorry you are, but you are thought of each day, of course for some reason my thoughts are of “Dancing” strange, wonder where that thought came fromJ love you all, have a better then “normal” day. Marla Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Marla, You may want to invest in the Sinus Rinse --it's a normal saline ph balanced, and flush your sinuses on a daily basis. That has been my saving grace since I have to use both oxygen with my cpap at night-- and do have seasonal allergies. I have the antral windows, and one has scarred over-- so may have to have that redone. Sarc loves sinuses-- it's another area that seems to be overlooked. I found it interesting that in FSR they say that the inhaled steroids help a few people, but if it is just sarc-- it's really no better than a placebo. I don't get any relief from them-- so I refuse to use them-- I honestly do better with the Sinus Rinse and OCEAN nasal saline that I can use many times each day-- it has made the difference the number of sinus infections that I get-- so that has helped. Find another ENT with a brain attached near his sinuses.... Hugs, Tracie************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Marla, When was the last time they did a spinal tap? I wonder also if you've had a small stroke that has hit that left leg. The MRI should have shown that--inless it was TIA. Hugs, Tracie************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Oh Marla, so sorry to hear your suffering. It's especially hard when you have to deal with cold doctors who lack communication skills. My 8th cranial nerve was hit last April. When it was my sinuses filled up and wouldn't stop. I also had incapacitating vertigo. It's hard to know without tests (even with them), but your sinuses may be caused by NS. I also have inflammation of nerves in my right arm and both ankles and feet. When my feet are affected I can't curl my toes either. The nerves aren't sending consistent signals to the muscles. I am on Remicade and Imuran, both to suppress my immune system. I am still weaning off prednisone. That is the goal, no symptoms and no steroids. It's been a bumpy weaning process, and it's not over. It's frustrating going for all the tests. Difficult to know which will give them the information they need to treat you. They all provide different information, as you know. I wish you all the best. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Tracie, I don’t really get many sinus infections maybe 2-3 a year, but I will try the Sinus Rinse I’ve done the ocean spray before too. I am waiting until I see my Pulm doc in April and get his advice about seeing an ENT and I’ve already got the name of another one. I still have an appt. with this guy who has no brain, think I will wait until the 24 hours before his appt to cancelJ, I canceled the CT and didn’t have that, I got the bill for the MRI and passed out, thank goodness we have insurance and that the hospital has a contract with them. It was 3,400, but the insurance didn’t allow half of that! Holy cow those without insurance a nightmare! I’m still fighting a bill from a hospital from 5 years ago that wasn’t right. I hope you are doing well. Thanks for the suggestions. Always appreciated. Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Saturday, March 10, 2007 3:13 PM To: Neurosarcoidosis Subject: Re: new symptoms Marla, You may want to invest in the Sinus Rinse --it's a normal saline ph balanced, and flush your sinuses on a daily basis. That has been my saving grace since I have to use both oxygen with my cpap at night-- and do have seasonal allergies. I have the antral windows, and one has scarred over-- so may have to have that redone. Sarc loves sinuses-- it's another area that seems to be overlooked. I found it interesting that in FSR they say that the inhaled steroids help a few people, but if it is just sarc-- it's really no better than a placebo. I don't get any relief from them-- so I refuse to use them-- I honestly do better with the Sinus Rinse and OCEAN nasal saline that I can use many times each day-- it has made the difference the number of sinus infections that I get-- so that has helped. Find another ENT with a brain attached near his sinuses.... Hugs, Tracie ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 I had a spinal tap 5 years ago, this neuro didn’t think it was necessary to do any more tests, he only did the MRI to rule out any other things that might cause the same symptoms, we looked at the MRI together on the computer, he said it looked normal with no other problems, he said that NS will show up with these type of sx’s from microgranulomas and that they are large enough to cause the sx’s but too small to see, he suspected that I have granulomas in the brain and the spinal cord, advise I go up to the max level of auto immune drugs my system can tolerate, he said he didn’t think steroids would even help. Tracie the sx’s are really strange, like I can’t lift my L leg at all while laying down, but I can pull it towards me, I can’t curl my toes with my legs stretched out, but again if I curl my leg up I can curl my toes. The neuro said multiple micro granulomas here and there would cause the “strange” sx’s. he seemed to know what he was talking about, which was a comfort since most don’t. Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Saturday, March 10, 2007 3:20 PM To: Neurosarcoidosis Subject: Re: new symptoms Marla, When was the last time they did a spinal tap? I wonder also if you've had a small stroke that has hit that left leg. The MRI should have shown that--inless it was TIA. Hugs, Tracie ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 as you can see I am going form new to old emails, I’m really not suffering Praise God, I don’t notice The leg doesn’t work unless I’m sitting down I can’t cross my leg over the other one, and when I knell down In church I have trouble getting back up, when I’m tired my right leg will start to drag, but it isn’t painful, just Annoying. I have numbness on the entire left side of my body, including my face. If I get cold that is painful, And I have a spot on my thigh where I have some pain that comes and goes, sitting, or standing too long Is painful. Other then that I actually feel very good! Hardly ever take anything but aspirin for the pain, My new neuro said I could take an extra Lyceria which I’ve only been on a month, but I haven’t tried that yet. I hope you don’t have a lot of pain. I can deal with a lot of things, but constant pain that gets me down, and I don’t have that and feel for those of you that do. Have a great day, Marla Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidp Sent: Saturday, March 10, 2007 3:45 PM To: Neurosarcoidosis Subject: Re: new symptoms Oh Marla, so sorry to hear your suffering. It's especially hard when you have to deal with cold doctors who lack communication skills. My 8th cranial nerve was hit last April. When it was my sinuses filled up and wouldn't stop. I also had incapacitating vertigo. It's hard to know without tests (even with them), but your sinuses may be caused by NS. I also have inflammation of nerves in my right arm and both ankles and feet. When my feet are affected I can't curl my toes either. The nerves aren't sending consistent signals to the muscles. I am on Remicade and Imuran, both to suppress my immune system. I am still weaning off prednisone. That is the goal, no symptoms and no steroids. It's been a bumpy weaning process, and it's not over. It's frustrating going for all the tests. Difficult to know which will give them the information they need to treat you. They all provide different information, as you know. I wish you all the best. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 for some reason my thoughts are of “Dancing” strange, wonder where that thought came fromJ Now, Marla, you know what a Stressbuster that is! Do you have some pets? Fish & hermit crabs probably wouldn't be any more impressed than cats, but a dog will definitely be interested. You don't have to dance naked, but the effect is better! There is a wonderful little movie, probably from 10 years ago, called "Dancing With a White Dog." I think it was Tandy's last film. Hume Cronyn stars. Well, I hope you get some answers. Have you considered asking for a referral to a different ENT? There is no excuse for his rudeness. It's possible that the CT would show something that the MRI doesn't. I know that different tissues show up better on some scans than others. I do have the problem bending my toes, but it's both feet & I'm sure is related to the neuropathy. My second & third toes look like they are glued together; I have to pry them apart to wash between them! I don't have the other problems you describe. Will keep you in my thoughts & prayers, more than usual. Marla, you are so special to me, and I'm sure to all of us. Ramblin' Rose Moderator Play Flexicon: the crossword game that feeds your brain. PLAY now for FREE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 , did you ever find out what was causing the chest pain? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: new symptomsDate: Fri, 9 Mar 2007 06:25:39 -0800 (PST) Marla, I had a cat scan and a hearing test to see what was happening in my sinuses, parotid glands, etc. My ENT said I had nasal 'thickening'and I had to switch up my nasal spray to a steroid spray cuz my eustation tubes were also thickened. I would get terrible earaches cuz they would stop up. The nurse had also told me I had a slight disease in my sinuses but I forgot to ask the doc what that was. Anyway I was already on everything I could have taken for it. He did say sarcoid could be causing all these symptoms. I am not or never was in the medical profession and have no idea what the difference is between an mri and a cat scan. Sometimes you have to see jerks, but only if they are actually helpful in treatment. A nice doc who doesn't really help you isn't worth much either. Too bad we can't all find nice docs who know what they are doing. I suppose if they biopsied the growths in your sinuses they'd know for sure. But I'd bet your bottom dollar it's sarc! I hope your leg problems get better. I have troubles with mine but they aren't too bad yet. My fatigue is out the roof though. And I'm still suffering with chest pain. ...fun, fun, fun. hugs S.Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I have some new neuro symptoms, just wondered if any of you have experience these. I saw a neurologist for some increase nerve pain, the Lyceria is helping a lot, anyway, a visit to a local neuro, showed on my neuro exam that I can not lift my L. leg up off the chair, R leg no problem, I can not curl my L toes forward, but can on the right, and I can not life my whole L leg up while laying flat down. I find myself dragging my left foot when I get tired. They also found my sinuses to be full of something, maybe just scarring? Sent me to an ENT, the man spent 5 mins with me, would not look at the MRI I just had done which showed the “stuff” in the sinuses, which is why the neuro sent me to him, well he told me I had NS, ok duh, then asked a few questions about my breathing related to my nose which is fine, looked in my mouth, up my nose (I’m sure that’s a nice view) one of those Kodak momentsJ, anyway then said I needed a CT scan of the sinuses, I asked if he looked at the MRI, he says NO don’t need to, wont tell me anything, I need a CT, when I questioned why he couldn’t at least look at the MRI first, he started to talk down to me, like, this is the nose and in the nose you have these holes, OK now I’m getting a little put out, so I said, I know those little holes are called windows, and then told him that I am an RN (OK retired, but still give me a break), then he got up and walked out saying you need a CT scan, sat me down in a chair in the hall and told me his assistance will schedule. So I did, but then after I left and started thinking about it, I got mad, I canceled the CT until I can see my Pulmonologist and talk to him. I don’t have an infection so what’s the big deal? Back to the neuro he said I have micro granulomas in my brain and probably spinal cord. And that I need to be on the highest auto immune drugs my body can handle, so I don’t get worse, probably won’t get better. So do any of you have these neuro symptoms? Just wondering, and what about the sinus, anyone have trouble there are need surgery there, after working for ENT’s I really don’t want sinus surgery! Just curious, as always you are all in my prayers, I know everyone is struggling these days, and I’m sorry you are, but you are thought of each day, of course for some reason my thoughts are of “Dancing” strange, wonder where that thought came fromJ love you all, have a better then “normal” day. Marla Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" Finding fabulous fares is fun.Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains. << image5.jpg >> << image6.gif >> Find a local pizza place, movie theater, and more….then map the best route! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Rose, Thank you for the kind words and the prayers, I see the doc that takes care of my Sarc next month so will wait and see what he has to say, and go from there! Prayers are greatly appreciated. Marla Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Monday, March 12, 2007 8:57 AM To: Neurosarcoidosis Subject: RE: new symptoms for some reason my thoughts are of “Dancing” strange, wonder where that thought came fromJ Now, Marla, you know what a Stressbuster that is! Do you have some pets? Fish & hermit crabs probably wouldn't be any more impressed than cats, but a dog will definitely be interested. You don't have to dance naked, but the effect is better! There is a wonderful little movie, probably from 10 years ago, called " Dancing With a White Dog. " I think it was Tandy's last film. Hume Cronyn stars. Well, I hope you get some answers. Have you considered asking for a referral to a different ENT? There is no excuse for his rudeness. It's possible that the CT would show something that the MRI doesn't. I know that different tissues show up better on some scans than others. I do have the problem bending my toes, but it's both feet & I'm sure is related to the neuropathy. My second & third toes look like they are glued together; I have to pry them apart to wash between them! I don't have the other problems you describe. Will keep you in my thoughts & prayers, more than usual. Marla, you are so special to me, and I'm sure to all of us. Ramblin' Rose Moderator Play Flexicon: the crossword game that feeds your brain. PLAY now for FREE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 I can’t lift my L leg at all while laying down, but I can pull it towards me, I can’t curl my toes with my legs stretched out, but again if I curl my leg up I can curl my toes. The neuro said multiple micro granulomas here and there would cause the “strange†sx’s. he seemed to know what he was talking about, which was a comfort since most don’t. Marla, Ya know, If your insurance will cover it-- can you see a chiropractor? Or an acupuncturist? I'm sure that it is the sarc-- but I know for me, my DC (110 lbs of pure cowgirl--she can adjust a 200# women and a 300# man like they were butter)-- and man, can she toss that haybail! Anyway, (I digressed)-- she has been able to make it so that the constant pressure on my low back-- is released with manual adjustment. (I can high center her over my thigh- good thing we're friends so the balancing act is sometimes hilarous-- which then with the laughter my low back will release.) Years ago, when this all first was starting-- I had serious numbness and weakness in my legs. I'd loss all sensation to my feet, and it wasn't until I was in a bathtub where I'd forgotten to turn on the cold water-- so it was only HOT-- and high enough to get to a spot on my calf that was still with sensation- that I went to an acupuncturist. After the 3rd treatment, I regained alot of the sensations-- and have not had that serious a relapse since. I wonder how your legs would respond to icepacks on the lowback. That is the major nerve connectors for the legs-- and if you do have a pinched nerve--or an impinged nerve-- that may help. The ice brings down the inflammation, and then as your back warms up-- the body naturally sends increased blood flow to that area- you're getting more oxygen due to the increased flow- and it is possible to see improvement. When i was in Auburn at the Pain Medical Rehabilitation Clinic-- they used ice massage. They take styrofoam cups, freeze them to about 28 degrees-- and then use them to do the massage. They start with going up and down the spine, until you're numb, and then they start working outward across the back and ribs, and along the sciatic nerve along the buttocks. Any "knots"-- which would the granulomas (the muscles and ligaments get calcium deposits and scarring hard spots) that stand out with the ice massage. (This is one of the ways they could find the "fibromyalgia trigger points) and then they would inject those trigger points with a steroid injection. Again, it was to take out the immediate inflammation (that's what steroids are good for) and then the injection had a longer acting lidocaine component-- that kept you from feeling the increased circulation-- and that brought the oxygen into the area- and again-- a better chance of healing. As the ice melts in the cup, the wonderful sport who's giving you the massage, tears away the cup bit by bit, so you can use most of the icecube and not have them complain of frozen hands. Anyway, that's my take on this issue-- and I do hope that whatever immunosupressant you can tolerate help. Blessings, Tracie NS Co-owner/moderator ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 I want to second that.....my chiropractor is awesome. She really works on those areas that get extremely tight and painful. My insurance also covers for massage therapy in conjuction with the chiropractic care. It is doing a lot for my pain levels and I am taking less pain medication which to me is a great thing. Take care. Terri > > In a message dated 3/10/07 8:59:45 PM Pacific Standard Time, > mebramer@... writes: > > > > I can’t lift my L leg at all while laying down, but I can pull it towards > > me, I can’t curl my toes with my legs stretched out, but again if I curl my > > leg up I can curl my toes. The neuro said multiple micro granulomas here and > > there would cause the “strange†sx’s. he seemed to know what he was talking > > about, which was a comfort since most don’t. > > > Marla, > Ya know, If your insurance will cover it-- can you see a chiropractor? Or an > acupuncturist? > I'm sure that it is the sarc-- but I know for me, my DC (110 lbs of pure > cowgirl--she can adjust a 200# women and a 300# man like they were butter)-- and > man, can she toss that haybail! > > Anyway, (I digressed)-- she has been able to make it so that the constant > pressure on my low back-- is released with manual adjustment. (I can high center > her over my thigh- good thing we're friends so the balancing act is sometimes > hilarous-- which then with the laughter my low back will release.) > > Years ago, when this all first was starting-- I had serious numbness and > weakness in my legs. I'd loss all sensation to my feet, and it wasn't until I was > in a bathtub where I'd forgotten to turn on the cold water-- so it was only > HOT-- and high enough to get to a spot on my calf that was still with > sensation- that I went to an acupuncturist. After the 3rd treatment, I regained alot > of the sensations-- and have not had that serious a relapse since. > > I wonder how your legs would respond to icepacks on the lowback. That is the > major nerve connectors for the legs-- and if you do have a pinched nerve--or > an impinged nerve-- that may help. > > The ice brings down the inflammation, and then as your back warms up-- the > body naturally sends increased blood flow to that area- you're getting more > oxygen due to the increased flow- and it is possible to see improvement. > > When i was in Auburn at the Pain Medical Rehabilitation Clinic-- they used > ice massage. They take styrofoam cups, freeze them to about 28 degrees-- and > then use them to do the massage. They start with going up and down the spine, > until you're numb, and then they start working outward across the back and > ribs, and along the sciatic nerve along the buttocks. Any " knots " -- which would > the granulomas (the muscles and ligaments get calcium deposits and scarring > hard spots) that stand out with the ice massage. (This is one of the ways they > could find the " fibromyalgia trigger points) and then they would inject those > trigger points with a steroid injection. Again, it was to take out the > immediate inflammation (that's what steroids are good for) and then the injection > had a longer acting lidocaine component-- that kept you from feeling the > increased circulation-- and that brought the oxygen into the area- and again-- a > better chance of healing. > > As the ice melts in the cup, the wonderful sport who's giving you the > massage, tears away the cup bit by bit, so you can use most of the icecube and not > have them complain of frozen hands. > > Anyway, that's my take on this issue-- and I do hope that whatever > immunosupressant you can tolerate help. > > Blessings, > Tracie > NS Co-owner/moderator > > > > > > ************************************** > AOL now offers free email to everyone. > Find out more about what's free from AOL at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
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