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Myasthenia Gravis

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#1 judyt


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Posted 29 May 2010 - 10:06 PM

Hi Everybody,
I am writing today to ask if anybody on the forum suffers from myasthenia gravis along with sclero, or if they have any siblings or other family members who do.

I live in New Zealand and have had sclero since at least 1966 if not before and my brother who is 6 years younger than me lives in Sweden - way out in the country near the Arctic Circle!!

Just recently Russell, my brother, has been experiencing muscle weakness and extreme fatigue which has been more or less diagnosed as myasthenia gravis. He has to go to Stockholm again next Monday for another consultation and probably confirmation of diagnosis. We have both been reading about this condition and I have come across an article which suggested that MG, Scleroderma, Rheumatoid Arthritis and Lupus are often found together in families.

I guess this is just an academic question really, except that I also suffer from severe muscle fatigue and weakness in my legs as well as frequent short bouts of double vision which is also an feature of MG. I am looking forward to reading whether anybody else has this condition.

Judy T

#2 janey


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Posted 30 May 2010 - 08:25 AM

Hey Judy,
WOW - 1966! That's encouraging!

Sorry to read that your brother is having physical problems. I did a little search on this site and found a section on Scleroderma and myasthenia gravis. Based on the one study that is quoted, these two diseases are not commonly found in the same patient. However, that is contradicted in an article at eMedicine.net on myasthenia gravis. This articles states "Some autoimmune diseases that occur at higher frequency in patients with myasthenia gravis are hyperthyroidism, rheumatoid arthritis, scleroderma, and lupus." So we obvious have a little contradiction going on here. I'll see if I can find anything else on the subject.

As far as whether or not these two diseases are common within families, I have no idea and can't find anything that supports a connection between family members and these two diseases.

Hope this helps.
Janey Willis
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International Scleroderma Network (ISN)

#3 judyt


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Posted 30 May 2010 - 10:39 AM

Thanks Janey!
Your WOW put a smile on my face - a great way to start the day. Yes 1966 was a long time ago now but yes I know that the Raynauds started then and in 2003 when I finally got a diagnosis there was an article on eMedicine which set out the progression of Limited Scleroderma and according to that I was a textbook case. First symptoms in the 2nd decade of life, more symptoms each decade after that until a slowing down in the 6th decade or so which is where I am now.

I don't think many people on this forum have been as fortunate as me not to have any serious organ involvement, even earlier this year when I was told I had PH, and went into a panic needless to say, it turned out that I has Rheumatic Fever as a child and my heart was suffering from Rheumatic Heart Disease which has now been remedied. The important thing for me as a Sclerodermian has been that I have always felt something was wrong and never gave up asking. Because of my pestering, things have been dealt with as they came up, Esophageal stricture and bowel prolapse in my 40's were probably the biggest things which have led to me being watched and when things like polyps and tumours have turned up in my stomach and bowel they have been dealt with and as a consequence I have avoided the consequences which can arise from leaving those things to grow.

My Rheumatologist said to me once that he felt that if all the people with smptoms as relatively mild as mine were counted then the incidence of Sclero would be regarded as much higher in the general population. I don't know about that, but I guess a lot of people do suffer in silence - but not me!!! As well I think I am probably lucky that none of the medications offered to me have disagreed with me and in fact have helped. I read other about people saying they have given up on taking something because they don't like taking so many pills, and in fact my little sister (who died 11 years ago) once said to me that she would hate to have to take as much medication as I do - I rest my case!!!

We have a saying in our family now that the more pills you take the longer you live!!

Thanks for your informative reply, you seem to have found the same confusing information as I have, so I think the best thing to do is just carry on as before doing the best we can with what we have got.

Keep on posting your informative articles, they are all so interesting and helpful.

Warm hugs from downunder.

Judy T

#4 piperpetpete


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Posted 03 June 2010 - 06:41 AM

Hey Judy,
I've had Ocular Myasthenia Gravis since 1989 and luckily, it's been pretty mild. It has never progressed to Generalized, thank goodness and no one in my family was ever told they had ANY type of autoimmune problems.
I have been Scl-70 positive for a year, could be longer I suppose, but a scleroderma specialist has stated I don't have active symptoms presently. I had burning pain and Lyrica has completely turned that around! All I've been told is once you develop one autoimmune disease, others could follow. I only hope, if I do develop scleroderma, it is mild like the Ocular Myasthenia.