I am a new member
 

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

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.

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

Scharla
 

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

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

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

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 ...

Thank you very much

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 ....

It seems that many MGers have Raynauds - my hubby developed it after the MG diagnosis.