Thymus removal? Success stories?
 

I have been diagnosed with MG after my antibodies test came back positive. Both my opthamologist and neurologist diagnosed me with a VI nerve palsy and a partial 3rd nerve palsie. I became skeptical when every week, one eyelid would go down and other would go up. But they refused to say anything other than the cranial nerve palsies. Finally, the Neuro gave me the blood tests to "calm my mind." Well, the results took weeks from Athena, but I am tested positive.

In the meantime, only weeks after getting the double vision and droopy eyelids, I now already have trouble speaking, swallowing real food and I have issues moving my tongue properly. When chewing, I end up with the food at the roof of my mouth and it is a chore to swallow. But, I can swallow liquids fine and even with a little bit of fluid, I can swallow food down quickly as well. I am also having a problem with mucus. I'm taking Mucinex in the morning and night to thin it out, but my gf says a few times she woke up and it sounded like I was gargling. I have also had difficulty swallowing mucus or spitting it out. Another weakness I have is spitting things out
My Neuro has now referred me to a Myasthenia Gravis specialist. The receptionists said I had to have my records faxed before the doctor would allow any appointments. I did that and I am still waiting to hear back. This is very frustrating as my symptoms are frustrating and at times I can not talk well enough to spell out my own name. The Neuro did prescribe prednisone, but I'm only taking 10mg a day for 7 days and then upping that to 20mg a day. I don't believe that is enough to help reduce any of my issues, but I am sure he wants the specialist to decide which tests and medications to use.

That brings me on to the Thymus gland. I have read a lot and the Neuro also mentioned the removal of the gland. I am a male in my early 40s and I believe I've only had this hitting me for 2 months. The thought of this type of surgery worries me, especially when the information about possible remissions isn't very well documented. Can some of you give me your opinions. If there's a high percentage of remission or greatly reduced medications, of course this is worth doing. But it is a pretty major surgery. I have not had the cat scan yet to see if I a tumor in it, but even if I didn't, I know some doctors like to remove it anyway.

And despite what I think are pretty bad symptoms, like not being able to speak often or the issues swallowing food, my Neuro insists I don't have bad case of MG and that I will be fine with the proper treatment. I read horror stories on the forums and I accept that most people who go into remission or have minor issues won't spend time on the forums any more, but I really have no clue what to expect.

Hi,

Sorry to hear you have MG. It's a challenge for sure.

Your neuro is doing well with the prednisone. It must be started slowly to keep it from aggravating the MG. It may take a few weeks to improve. It's a shame you were not prescribed mestinon, which works fast to temporarily relieve symptoms. Perhaps give him a call about that.

The swallowing and managing saliva issues are potentially very serious. It doesn't take much from that point to impact respiratory function. I would not recommend using Mucinex, either. If you get where you cannot swallow your saliva, it is an emergency, and you need to seek help. Be very careful with eating. Slow down and try not to talk and eat simultaneously when you are having trouble. Make sure your SO knows how to do the Heimlich and learn how to do it on yourself as well. I've benefitted from that twice myself.

As for the thymectomy, it is a crapshoot whether it will help or not. If you explore minimally invasive options, you will find that the recovery is not that bad.

I hope you get into the specialist soon. Keep bugging your neuro's office about that referral, especially in light of your worsening symptoms.

Good luck.