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Myasthenia Gravis and CFS

Author	Comment
Kerree	Myasthenia Gravis and CFS		Lead	[-]
Posts: 304 03/03/08 18:47 USA	Tags : None Hi-- I have recently been diagnosed with Myasthenia Gravis. I've had CFS for a long, long, time and just thought my weakening muscles were a part of CFS. Then last year the weakness progressed to nearly complete paralyis. My vocal chords, breathing muscles and swallowing muscles were all effected, along with my arms, neck, torso etc. I started to travel to see a CFS specialist about a year ago. Turns out there are a few of her patients who have CFS who also have Myasthenia Gravis. Since I went so many years taking my progressing weakness for granted, wanted to share in case anyone else is experiencing the profound muscle weakness. The good news with Myasthenia Gravis is there is a treatment! (No cure, but a treatment that helps the muscles move) With Myasthenia Gravis, the chemical acetycholamine is broken down so that there is not enough left in the muscles for sufficient movement. With MG the muscles become weaker with use. The medicine is specific to MG and helps keep acetycholamine (not sure I'm spelling it right) from being broken down, so the muscles have more of it to move with. It is impossible to describe the joy I felt when the medicine started working! I am not normal as far as muscle strength, but I am so much stronger. ie... My voice is strong enough to sing again (hadn't been able to sing for years) and shout up the stairs at my kids. At night I breathe comfortably because the muscles that expand when we breathe are stronger. I don't have to have all of me held up with pillows. Too gain higher function is priceless especially since functioning with CFS is already a pretty big challenge to one's level of function. Anyone else with both CFS and MG?
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Sunshine56		#1	[url]	[-]
Posts: 47991 03/03/08 20:51 My name: Mosken ezOP Board Owner Norway	I'm moving your posts to our coping forum! That is actually good news! Maybe this could be the case for more CFS members! I hope you will continue to be helped with the medication. Last Edited By: Sunshine56 03/03/08 20:54. Edited 1 time.
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jillybromley		#2	[url]	[-]
Posts: 2684 03/06/08 22:44 Jilly in UK	Hello Kerree, I was very interested to read your post. Firstly , can I say how delighted I am to hear that your voice strength has been increased by the new medication. How wonderful that must be! All these things can help morale so much. To be able to sing must raise your spirits so much. I think I have mentioned before that I have a sister who has had CFS for about 30 years. She is worse than me, and is completely bedbound. But in the last 5 years the weakness of her muscles has progressed so that she is unable to speak at all and cannot breath naturally. She only has the strength to breath in very short breaths from the top of her lungs. Her legs are peculiar and do not obey instructions from her brain. The only way she can communicate is to write little notes to her husband. I hope it is ok to pass this information to her, in case there is a possibility that her voice problems are caused by MG. I too have voice problems, but can speak softly for a minute or two at a time, and I only occasionally have the breathing problems, and my muscular weakness is intermittant so I don't think I have MG, but I think it's very possible that she may have it, hearing your description, and it would be marvellous if she could be helped. Thank you for sharing this information Kerree. I will pass it on to her. Hugs to you .... I hope the medication continues to help you feel stronger ....
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karses		#3	[url]	[-]
Posts: 1 04/18/08 23:41	hi kerree i was diagnosed with fibromyalgia and cfs 15 years ago and spent most of those years in bed and missing out on my life and my childrens lives.....just about 2 years ago i started experiencing severe muscle weakness with some episodes of paralyzing of my arms and legs with my eyes not being able to keep open.....very scary but just kept thinking it was the worsening of the cfs and fibromyalgia....but my symptoms are very different my muscles get very weak after using them for a very short time.....i had a anticeptor antibody test but it was seronegative for MG...yesterday i had the muSK blood test wont know for a week what that test will show....i have an appointment with a neuromuscular neurologist on may 19.....im wondering if i was misdiagnosed 15 years ago and could have had MG all along.....im 45 years old and feel like i have wasted so much of my life.....i have been so depressed for so long....i have tried to take certain medications but get terrible side effects and end up in bed wit severe fatigue and dizziness wit muscle weakness even with certain antibiotics......your story sounds so familiar....i need someone to talk to...i have not been able to keep any friends they dont understand why i cant do certain things and keep up with their lifestyles.....i have lost so muc muscle tone i weigh 95 pounds...... i hope i can tolerate medication if i am diagnosed with MG.....i cant live like this anymore....im so glad i READ YOUR STORY i feel there is still some hope....how are you feeling now?? still feeling better? did you have the muSK blood test? i would love to hear more of your story about how you got diagnosed with MG......thank you karen
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Kerree		#4	[url]	[-]
Posts: 304 04/21/08 17:48 USA	Hi Karen and Jilly, Sorry to take so long to respond. I've been off line awhile. It is so interesting to read your sister's story Jilly, your own and yours Karen as they sound very similar to mine. I'm also sorry for what you all are going through as the extreme weakness takes so much function and independence away! Jilly, the breathing muscle weakness was the scariest symptom-- I feel so much for your sister! When MG is severe, the "grave" muscle weakness (Myasthenia Gravis) can mimic the weakness of ALS. My blood test is also negative (ten percent of MG patients test negative),but the MG medicine works! When the MG medicine (mestinon) works--as mine has been for about six months now--it is a diagnosis in itself. Mestinon's use is to strictly keeps acetycholamine from being broken down in the muscles, so when it works, our muscles are needing the aceycholamine. It was my CFS specialist who diagnosed it and we look at it as "atypical MG" since the blood test is negative. This is the tough part is finding a neuro. or internest who will do a trial of Mestinon when the blood test is negative. Finding the right dosage of med. is also difficult as the amount needed is unique to each person. (The first dosage I tried worked for two days and then quit, then I doubled the dosage and it just kept on working.) I'm still working with dosages to get the best effect. Just tried time release and it didn't work for me--muscles got weaker. I'm back on the non time release, which works so much better. Now I'm increasing dosage of this by a little bit to see if I can gain a bit more strength. (Tricky because if dosage is too high it also can cause greater weakness.) The MG medicine has increased my function--but not cured my systemic chronic illness. (MG is treatable with meds., but not cureable.) Overall, the medicine has increased my muscle strength, but my muscle strength is still much weaker that a "normal" persons. My muscles still become weaker with use but are much much stronger than they were. Karen, I too have episodes of weakness to paralysis that come on quickly--they are not the MG. I would be interested to talk to you more about yours. These episodes are debilitating and scarey.I too am 45 and been ill for almost twenty years...I can relate much to the feelings of great loss. Thank you so much for sharing Karen, Jilly about your experience and Jilly your sister's. I did not know there were others with CFS experiencing the disabling muscle weakness. Perhaps "atypical MG" is a part of CFS for some of us-- It would be wonderful if Mestinon (generic form-Pyridostigmine Br.) would help each of you. Sincerely, Kerry
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violia	I have MG and think that may have been my dx all along	#5	[url]	[-]
Posts: 1 03/20/09 02:06	I just found this group. I have had FMS CFS for many years and now just a few weeks ago was dx with the ocular Myasthenia Gravis, and potentially the generalized MG. I feel I have been cheated out of my life . I think this has been what was wrong with me all along . I am not young anymore and so much of my life is gone. Fight to get a correct diagnosis. My antibodies were positive. My thymus is not enlarged however. I do have enlarged lymph nodes on my lungs. I am seeing a neuro ophthalmologist. V
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