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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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09-17-2007, 09:52 AM | #7 | |||
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I haven't been diagnosed with Fibromyalgia, but my Cardio said he wondered if I didn't have it. He said that it was an inflamation of the fibers of the muscles. Since I have Raynauds, he seemed to think that they sometimes go hand in hand. He seemed to take fibro very seriously. I also have nerve damage-bi-lateral, so I'm not sure what is causing what sometimes.
Oh, and I do know several mg'ers who have fibromyalgia as well. It seems to stand to reason the way we have to work tired muscles. Have you ever check out Stan Way's site about his personal excercise program. One has to be very careful. I was told walking was the best for us, and has to be done under a care of a doctor. Last edited by Maxwell'sMom; 09-17-2007 at 09:54 AM. Reason: wanted to add |
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03-19-2009, 12:47 PM | #8 | ||
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Quote:
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07-11-2011, 01:15 PM | #9 | ||
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Quote:
I have had Fibromyalgia since 1999. I have had my ups and downs with it but have managed and adjusted to the flair ups and know what I need to do to take care of myself. But in the last 1.5 yrs or so I started having shortness of breath, then came the weakness in my neck, arms and chest. I also started getting very hoarse most all the time and then it started affecting my singing voice. My right eyelid also droops. I just saw my Neuro again today and I am having repeat chest xrays and next week a pulmonary funct. test. I test negative for the anti-bodies which my doctor says about 30% of people do. I had an EMG which also was fine but I told my Dr. that they didn't test the muscles I feel weak in. To me it was a waste of time. My first pulmonary function test was also fine although I do have lung nodules and some infiltrated areas in the lower part of my lungs. My personal experience tells me that what I am dealing with now is a separate issue and not fibromyalgia. Can one exacerbate the other? I believe it can but I feel it is 2 separate diseases. I am also hypothyroid and so have an immune disease which I've had since the 80's. All of these are interconnected I'm sure but still separate issues. My Dr. said today that he feels the fibromyalgia could be giving me the myasthenic response. Again, I feel it is 2 separate demons. We will know how to proceed he said when I get all the test results back as well as the blood work I also had today. While fibromyalgia is a muscle disorder and causes pain in the muscles, I really did not have much pain at all when the shortness of breath and other symptoms started. I have been on Mestinon early on when I first saw him and then he started me on Prednisone which I took for about 2.5-3 months but developed serious pain and burning in my stomach so he said I have to stop because it can give me an ulcer so I stopped taking it which I did last thurs. My stomach is still hurting but am taking antacids etc. for it. He feels it will settle down soon. I also got bad charlie horses, puffy face, shaking, bloated stomach. Not so good side effects. I do not want to ever take Prednisone again. Coming off the Prednisone has caused muscle pain. So I feel like I am in a flare up. Hopefully, that will subside once it's all out of my system or it is happening because coming off Prednisone has caused a flare up. Who knows???? I am not sure about you or anyone else that seems to have both but I know how I feel with a flare up of fibromyalgia and I know how I feel with the Myasthenia Gravis. Feel free to contact me or ask any questions. I hope some of what I have said is helpful. Take care, blondieslp |
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"Thanks for this!" says: | richimahan (01-10-2015), TheoRhetorical (02-19-2020) |
09-27-2013, 01:11 AM | #10 | |||
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redtail, I have had fibro for 15 years. I was diagnosed with Myasthenia Gravis Jan. 2013.
I think I had MG for a while before a Neuro would listen. The fibro and MG seem to play off each other sometimes. Making both worse. Good luck! |
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"Thanks for this!" says: | richimahan (01-10-2015), TheoRhetorical (02-19-2020) |
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