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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-03-2013, 12:52 AM | #1 | ||
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Hello, I am new to the community. I am Scharla from west Texas. I was diagnosed with Lupus,Sjogrens Hashimoto and Raynauds four years ago. About a year ago my eye starting drooping and I was so weak...still am. I was diagnosed with Myesthenia Gravis. I am trying to learn as much as possible. I am no Cellcept...my hands have started peeling. I have been on it for about 5 months. I did not want to start it as I was on High doses of pred. and Methotrexate one time and my immune system was so low I stayed in hospital for 24 days. Until four years ago I was a very active person. It seems I am just collecting auto immune disease...The neuro. said the MG is moving quickly in my body so I have to take this Cellcept. If it does not work IVIG and Plasmpheresis will be next. He also says if the Cellcept does work I might get to stop the Mestinon. It has never been mentioned to remove my Thymus
I am just wanting to learn about MG, any new treatment have most of you had your Thymus removed? If I take too much Mestinon I have urinary incontinence so I have to adjust it myself. I am getting very weak on this Cellcept and don't know what to do.. Any advice is appreciated. Hugs Scharla |
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08-03-2013, 09:38 AM | #2 | |||
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I have not had my thymus removed, but some of us have and they said it helped. It seems like you need a whole new immune system. Sorry for your hard time.
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Celeste |
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"Thanks for this!" says: | Fortunatos (08-05-2013) |
08-03-2013, 11:51 AM | #3 | ||
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I am so sorry that you are having such a rough time! I really hope you find the treatment you need to get your life back to somewhere near where you were before. I am still awaiting diagnosis and treatment but there are lots of members here who will have lots of advice and tips for you. The members here are a wealth of knowledge and experience and so supportive - I am sure you will be as glad as I am to have found them!
Sorry I'm no real help to you but i just wanted to say Good Luck and keep us updated!x |
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"Thanks for this!" says: | Fortunatos (08-05-2013) |
08-03-2013, 01:55 PM | #4 | ||
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I don't know if I can help much. My MG symptoms are so mild compared to yours, but there are a lot of people on this board who can help. I am 75 yrs old, and have had symptoms for about 4-5 years. I have not had my thymus removed, the cat scan showed normal.
I am on 4 x 60 mils of mestinon daily, and my symptons are very mild, with a bit more optical problems than anything else. Before the mestinon, I had trouble chewing--speaking--and raising my arms for very long. Hopefully the docs can find a solution for you also. Stay in touch with this group for help. By the way, I was raised in Amarrillo, and spent many years in Lubbock, Texas, until I moved to San Antonio. Best wishes for a quick solution to your troubles, look to read more from you. FREDH Last edited by FREDH; 08-03-2013 at 02:04 PM. Reason: CHANGE NAME TO Scharla |
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"Thanks for this!" says: | Fortunatos (08-05-2013) |
08-03-2013, 02:09 PM | #5 | ||
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Wow,
You are going through a lot. At this point, I have symptoms, with the eye problems being the most annoying, but have not had the official diagnose (yet), and am not taking any meds. All I can say is that I'll try to keep you in my prayers. Rod |
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"Thanks for this!" says: | Fortunatos (08-05-2013) |
08-03-2013, 02:24 PM | #6 | |||
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Welcome to the group Scharla and so sorry you are having such a rough time with all those autoimmune issue. I have not had my Thymus out but wanted to, because I have read it is the best chance of remission (30%).
I am currently being weaned off pregnisone and I am taking mestinon. What are your main symptoms for MG and your mestinon dose? I take mestinon 60 mg x4 a day and 180 slow release at night. Pregnisone made me feel very good but I am down to 30 mg every other day and the symptoms are coming back strong. I had a bad chocking episode at lunch and back to sleeping 12+ hours a night. My MG came on 3 years ago after abdominal surgery. I tried IVIG and did not tolerate it well. I am suppose to start cellcept in a month. kathie |
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"Thanks for this!" says: | Fortunatos (08-05-2013) |
08-03-2013, 04:11 PM | #7 | ||
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Are you on Plaquenil for the Lupus? I think I've read it can be contraindicated in MG (and I think I've also read some people with MG on it can be fine). Just curious about your experience and what you've been told on that subject ...
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"Thanks for this!" says: | Fortunatos (08-05-2013) |
08-03-2013, 11:55 PM | #8 | ||
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08-03-2013, 11:58 PM | #9 | ||
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Yes I am on Plaquenil. I have not bee advised to stop it...but I will sure ask the doctors at my next visit. Thank you so much ....
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08-04-2013, 07:45 PM | #10 | ||
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Junior Member
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It seems that many MGers have Raynauds - my hubby developed it after the MG diagnosis.
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