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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cassynchris 07/27/2010

I found out a few months ago I have MG, I had never heard of this before and was very upset about having MG. My ? is when do I need to have IVIG done....I have problems talking and eating I get very tired. My Doctor is saying that I dont need to have it done yet but when. I dont feel myself anymore, I dont feel like doing anything and I have a job where I have to talk for 8 hours aday. What should I do?

I need help

deleted_user 07/27/2010

Hi there, I am so sorry to hear you have MG. In the early diagnostic phase most neurologists will see what the most conservative management possible will provide. That usually means starting with Mestinon alone, if that doesn't provide enough relief or if there are severe side effects the next step is adding an immunosuppressant. The first line, though not for long duration is prednisone. Prednisone comes with it's own side effects but works well to quiet down our faulty immune systems. After that a steriod sparing long term immunosuppressant will most likely be added such as Imuran, Cellcept, or Cyclosporine.

At this point your neurologist should have ordered a thymus scan, if there is a thymoma present they will perform a thymectomy and this has the possibility of reducing symptoms. Or if you don't have a thymoma but you are positive for the AchR antibodies they may still recommend a thymectomy.

If, at any time during your treatment you have a severe exacerbation (severe breathing or swallowing difficulty) or a myasthenic crisis (inability to breath or swallow) you will most likely be given IVIG or Plasmapherisis in a hospital setting. Or if the above treatment plan does not work and you are still significantly weak, they may decide to incorporate IVIG or Plasmapherisis. Both are extremely expensive and have their own risks associated with them so they are reserved for the most severe cases or those that do not respond to the standard line of treatment.

As far as work is concerned I would write down a journal of a weeks worth of symptoms to go over with your neurologist and have a conversation about what the realistic expectations would be regarding work. Most of us do not know out true disease course for at least 12 months with the majoritiy taking up to 2 years. That doesn't mean you will not get any better during that time, it just takes about that long for your body to adjust to your meds and your illness and so it takes about that long for your doctor to be able to give you a more detailed answer in that respect.

The Job Accommodation Network has some resources for people with myasthenia needing accommodations for their disability on the job front, That link is.... http://askjan.org/media/MG.html

I hope this helps!
Jen

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