Myasthenia Gravis

[Natshell]

I have been dealing with problems like difficulty swallowing, eyes not adjusting to the dark, slurred speech and overall weakness etc for years. About 6 years ago, my GP found that I had a Thymoma and sent me to a surgeon who sent me to a neurologist. Neurologist did a workup and told me that according to my symptoms and his examination, I had MG He recommended some really scary drugs and told me that I would have a fight with the insurance company because my antibodies weren't "as elevated" as they like to see them. Also that horrible electrical stimulation test was "inconclusive. I didn't want to take the drugs he was talking about and just went home and learned to cope. The thymoma has only grown a tiny bit at last check (almost 2 years ago).

Here is the problem, in the last year or so (very stressful months) the symptoms have gotten waaay worse. I can't even walk to the end of the block and back. If I clean my house or go grocery shopping, I know that for the next few days I will be in bad shape. My bad reaction to heat has gotten really severe and immediate. I just can't go outside if it is hot and I can't take a hot shower or bath if I want to walk afterwards. Anyway... etc, etc.

I am considering going back to the doctor but I have to have the support of insurance. Period. And I really don't want to go through that test again. Are those tests conclusive? Is there something else that could cause all this including the thymoma? And how do they know the tumor is non-malignant? Is anyone else coping with this without the drugs?

For the record, I am a 46 year old female. I also have a problem with bloodclots and I think my thyroid may be going south as well. (The bloodclots are why they wouldn't remove the thymoma, btw.)

[liddyann]

I can't imagine going through my day without mestinon. I don't know about the EMG test. I would go back to the dr and request the bloodwork to check your antibodies. After 6 years, they might be where the insurance co. "needs them." Isn't that a load?!?! You pay for insurance and they can still deny you!!

Good luck.

[amm34]

EmG is only 60% sensitive, and it rarely detects it in its early stage. It is actually better to rule out muscular dystrophies and such. I don't know what insurance you have, but you do not have to be seropositive to qualify for medications, you just need a doctor that is diligent. Insurance companies usually will not pay for IVIg as a monotherapy except during pregnancy, however if you use it with another immunosuppressant it ought to be covered. I take cellcept, and mestinon, and most recently started IVIg (which is amazing!!!). I, too, was terrified of the meds. You read the side effects which seem worse that MG, but trust me, it's so worth it. You learn to cope and adapt to your symptoms, but once they are gone you cannot believe the difference.
Having thyroid probs doesn't surprise me,as they often go hand in hand. You actually are lucky in a way. Given you have a thymoma, it is likely that once it is removed your symptoms should resolve w/i 3 yrs and you can live a life w/o meds. My doctor went to a recent conference on MG and he came back and tested me for anti-striational antibodies. If you have these, your MG is most definitely associated with the thymus. If you don't have these, it does not mean that the thymus is not involved, but it is more of a gamble. I would have your doctor check that. As long as you have a confirmed diagnosis of MG the insurance co should pay for it. Sometimes you just need to be your own advocate. With my regime I have had very few side effects and as of a mo ago went into remission w/ IVIg. I personally went through a denial stage, and was less than compliant with my meds for the first few mos, but once I convinced myself I did have it, and I had to deal with it, things were better. Good luck!!