Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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clark01 10/19/2013

I was diagnosed with MG in June. My symptoms started long before then. In January I was having drooping eyelids, slurred speech, and overall muscle fatigue. In May I went into crisis and landed in the hospital for a week because I could not breath. The hospitalist diagnosed and the pulmonologist dx me with COPD. After the hospital visit I had a lung function test and was told I did not have COPD. I ended up back in the hospital again in June for 3 days. My PCP was the person that was exploring MG. Blood work confirmed the dx and the neurologist confirmed while in the hospital. I have been on prednisone, mestinon, and have had several month of IVIG. Nothing seems to work. My vision is blurred, my head droops constantly, and I can only work a few hours a day. I have been reading your post and it helps me understand my disease. The neurologist thinks we should try plasma exchange. Can you please share
your experience..

Thank, Clark

chuckie1 10/19/2013

WHat about plasmaphoresis I had it and it truely helped!!

clark01 10/19/2013

that is what I meant. misspoke.

annkemp 10/19/2013

I had 10 round of plasma exchange . Then high dose of prednisone
Cellcept and constant mestinon. that took 6 months until I could even change sheets on my bed. This can get nasty . I didn't drive for 8 months.
Now a couple years later I drive and watch my gran kids
We make it.
Plasma exchange will keep you from getting worse. go for it.
Scary at first but the people who do it specialize in it and do a great job. Oh a neck brace will help too.
You will get better but sounds like you are lucky to be alive.
Ann

bweeds 10/19/2013

Clark, It usually takes at least six months to find a combination of medications that works well for those with generalized MG. The fast actors are mestinon, prednisone, IVIG, and PLEX. Thymectomy may or may not provide relief. Since Mestinon will not work if the MG is severe (some muscle receptors have to be free) and prednisone, IVIG, and PLEX are not really satisfactory long term solutions, an immunosuppressant is usually added to the mix, most commonly among this group Imuran or Cellcept, but there are others. Other drugs are being tested, but since our condition is rare, most drugs are used off label even if they have been used to treat MG for forty years or more. So there are many things available and may become available that you and your doctors haven't tried. We seem to do best if we have a good neuromuscular specialist that has seen many patients with MG and keep ourselves informed. This is a good place to come for information and encouragement. Welcome and sorry this is what brings you here. b.

clark01 10/19/2013

Thank you. I feel like I am going crazy. Thanks for your input

Tim62 10/20/2013

Sorry that you have to be here, but welcome to the group. Hope you find some relief from symptoms soon. Please keep us updated.

Bamboolilly 10/20/2013

Hi, Clark,
This can be a very scary time. I remember the past year well. But it's getting under control, and while I'm not great, I'm getting better. It's a slow process for sure, and can be frustrating if you are used to being healthy and active - most of us. Stick with this group. Although only one dr I know of in the group, there is a wealth of info. We r here for u.
Be well

deleted_user 10/20/2013

Since MG is a snowflake disease, no two MGers have the same symptoms and react to treatment in the same way. It may take a few tries to get you where you need to be, but don't give up - as frustrating and overwhelming it may be. When I was first diagnosed I couldn't work and was out for the whole school year. I was able to work all of the last school year and am back at it again. My meds have changed and I am at a point where I am stable. With the symptoms you are still exhibiting, cellcept might be a good choice for you. I've never been on it, so you will need to hear from others on how it may or may not have benefitted them. Hang in there!
CindyC :)

clark01 10/21/2013

thanks all I have CLL as well and I do not think I can take cellcept.

clark01 10/21/2013

cellcept is used to treat leukemia as well. I could take that. I am going to dr. this week and will see what she thinks. have to consult with oncologist as well.

clark01 10/21/2013

cellcept can cause swollen lymph nodes and since I have leukemia and swollen lymph nodes I am not sure if I could take this or not. will check

snowbeltfolkie 10/21/2013

Hi Clark,
Sorry you have the reason - to be here, on this MG forum.
There is indeed - a wealth of info, available here.
The people here? Literally helped to save my life: with their advice, their encouragement, and by relating their experiences with MG.

** Ask your Neurologist and your Oncologist -
- about IV-Infusions of Rituxan.

My Neuro prescribed this treatment for me, when other treatments did not work for me.
(Rituxan, for MG? Is one of those off-label uses, that b. is talking about.)

A possible advantage, for you?
Rituxan was first used, as a treatment for leukemia.

Hang in there!
Hang with this group, hang with anything and anybody - that helps!
- Ross

clark01 10/21/2013

thanks Ross. My oncologist has considered this and is going to consult with neurologist. I have been reading this forum for several months and have learned a lot.

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