My Rare Case Of Myasthenia

I am a 21 year old female who was diagnosed with myasthenia about a year ago. It first started with shortness of breath and lead to muscle weakness and throat weakness. I am seronegative, and negative for EMG. The only thing my neuro has diagnosed me with is the fact that when he shocks my phrenic nerve, there is an increase in fatigue. Oh and my thymus is enlarged.
I dont respond to Mestinon, IVIG, Plasmapharesis. The only thing I have responded to is prednisone. I got a thymectomy 5 days ago and hoping this will help. Does anyone else have a similar story? Mine is very rare and difficult to diagnose so I was wondering if there is anyone out there that is similar
adebaji adebaji
5 Responses Nov 23, 2011

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I am 52. About 10 years ago I asked my doctor to refer me for an eye lift because of drooping eyelids. Of course I was then diagnosed with mg. When I saw the surgeon he recommended that I get the muscles repaired instead of an eye lift. I agreed and for ten years had no issues. I am starting to feel the symptoms again so I am taking mestinon. I expect to have another muscle repair soon so I don't have to deal for another ten years

My two year old son was diagnosed with mg in August last year. He has had a crisis and has had his thymus taken out. He is currently on prednisone twice a day and mestinon every 4 hours even while sleeping. It has been a difficult journey but he is a very strong little boy. Which I knew what lies ahead as far as his health is concerned.

Mine came on like a freight train. It started with the droopy eyelids and all that stuff. Then my left eye just kinda died. I was diagnosed with mg at 14 years old. They said my thymus was enlarged and had to go. By the time they took it out it was the size of a deflated basketball. They told me I would have a little scar. I ended up having split sternum surgery! Those LIARS!!! LOL! I had my thymectomy when I was 15. I have been doing great ever since. I did have to have surgery to fix my eye, but now it just looks like a scar on my eyeball. Chicks dig scars!

So tell me. After the surgery, can you see perfectly well?

Yes. After a couple of months the double vision started to go away. I had almost 25 years of remission before my symptoms started to return. Its not as bad as when I was a kid though.

Hi there. I was diagnosed with MG when I was 24 (am not 47). For me, it came on very rapidly. My face basically froze. I couldn't move my tongue, my eyelids started drooping, I couldn't keep food in my mouth and most scary of all, I couldn't control my speech or swallowing! I was misdiagnosed a few times until one day, I couldn't even swallow my own saliva, at which point, I was taken to Emergency and seen by a neurologist, tested, and then ultimately, I had a thymectomy. I have been on Mestinon for 22 years now, and am doing very well. If, however, I don't take my drugs, I start to lose my ability to control my speech, which sounds like terrible slurring. I also get a huge amount of fatigue in my facial muscles. If you just had your thymectomy, you are probably still very sore and swollen and will be for quite some time. Hang in there. It will get better. It is a very rare disease, not one that many doctors encounter, so be prepared for the constant questions and interest by medical professionals. I since then have been diagnosed with Celiac Disease and Cicatricial (Scarring) Alopecia, both autoimmune diseases as well. As my doctor put it, "I am prone to them:. Good luck to you.