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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-25-2007, 02:09 AM | #1 | |||
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I was just wondering does anyone else who has MG have fibromyalgia.
I went and saw my neuro on Friday(always such a pleasure NOT) He mentioned my arm and leg pain (as my neuro nurse whom I see had written to him, and had mentioned it in her letter) he asked if I still got it, I said yes, and then he went onto another subject. Today(wednesday) I got the letter he sends to my GP and a cc to me, in it he says "..... a background of generalised muscle ache and pain and fatigue, which is probably a form of fibromyalgia (relationship to MG)." and thats it nothing else, needles to say Im a little confused . I will talk to my neuro nurse, shes wonderful in looking after me and answering all my questions my neuro doesn't have time to answer. But I thought Id see if anyone else has these 2 diseases?!?!?!? |
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"Thanks for this!" says: | TheoRhetorical (02-19-2020) |
07-25-2007, 07:30 AM | #2 | ||
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Greetings,
Thanks so much for posting the question about the link between MG and Fibromyalgia. I was diagnosed with fibromyalgia about a year ago. In January I started having some blurred vision as well as muscle fatigue after I stopped taking prescribed medications. Because of your post I think I'll contact my neurologists. i have been having migraines for a number of years, however they recently stopped (not sure why). I have experienced significant brain fog - perhaps there is a connection that may mean that many patients should see their neurologist along with the rhumatologist. tk |
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07-25-2007, 09:46 AM | #3 | |||
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I am only in the process on getting diagnosed with MG but I was diagnosed with fibromyalgia many years ago.
Studys say that autoimmune disease comes in packs and they both are considered to be one. If my MG comes as a positive - which my neuro says yes but I want another opinion - it would be my fifth autoimmune disease. But from my research, many docs do not consider that MG causes pain... while it seems that many with MG do seem to suffer with it. I have no idea if it is a separate issue - i.e. fibromyalgia - or is the aches associated with MG. There are supposed to be specific pain points associated with fibromyalgia. So for a formal diagnosis, my rheumatologist documented the pain with those points and did blood tests. Hope this helps.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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07-25-2007, 10:03 PM | #4 | |||
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thanx for your replies, am to exhuasted to reply properly now, but I will soon.
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07-26-2007, 10:40 PM | #5 | |||
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Hi again
went and saw my GP today, on an unrelated topic, and mentioned the letter from the neuro, he said maybe he was waiting to see how things panned out over the next few months, which is strange because Ive had this pain for a few years now, so I guess a few more months wont hurt, much. Will keep you informed of how things go. |
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07-27-2007, 07:19 PM | #6 | ||
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Hi Redtail
I have generalized myasthenia and fibromyalgia. 1st fibromyalgia, from the last 10 years. Started to treat MG last year. Bluestone |
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08-22-2007, 09:08 AM | #7 | ||
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I had Mg for 2 yr then diag with fibro.......now on my 3rd yr with Mg and into my 2nd with fibro..........my RA said it is linked
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08-22-2007, 09:33 PM | #8 | |||
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I've never been diagnosed with fibromyalgia, but I do have pains and aches with my MG. My original neuro, more than 30 years ago, who was an MG specialist, and ahead of his time, recognized pain as being a symptom of MG, but not of what he called classical MG. Most neuro's buy into the no pain with MG mentality, though in the very little research that has been done on it, many MGers report pain with their MG. Unfortunately, we usually don't get treated for it because we're not supposed to have it.
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08-23-2007, 01:42 AM | #9 | |||
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I have just recently been back to my gp, because the pain was getting bad, and he informed me that the pain was due to lack of excercise, the muscles contracting and pulling on the joints!!(he did give me a prescription for pain killers, Im surprised he didn't send me off to see the psycologist as well, you know, its all in your head dear!!!!)he didn't even ask me if I excersised or how bad the pain was??, So has sent me off to the physio, whom I see tomorrow, shes a loverly lady, and Im sure will help me, and will tell me if she thinks its not what the doctor thinks it is. Sorry for venting
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08-24-2007, 08:34 AM | #10 | |||
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I was doing physical therapy for my frozen shoulder and not able to to really make any "progress". I was using 3lb weights (pathetic!) and when I tried after a few months to move up to heavier weights, I was not able. Now my other shoulder is in bad shape and I am still using the 3lb weight. No one has been able to tell me how much exercise to do but I try to do some... but my lack of progress is what kinda gave the doctors a clue that something else was wrong.
How much exercise are MG'ers supposed to do?
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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