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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   Offically "probably NOT" MG (https://www.neurotalk.org/myasthenia-gravis/50580-offically-probably-mg.html)

erinhermes 08-01-2008 10:28 AM
Eeyore - how are you today? I'm depressed..........feel like banging my head on a wall - can't seem to get out of this funk that started last week. I mean, I called my doc to say my eyes were giving me problems, and the next thing I know I'm having a cath put in my neck and going out of my mind. My hubby was great as always, but I'm starting to grow resentful of other "healthy" people. People just take for granted that everyone has the strength/energy to move around and do stuff - my fellas wanted me to make dinner for them - I wanted to scream! It's not their fault, but I just feel so helpless right now. I know I'll get over it. I know I'll feel better. I just am feeling sorry for myself right now. You had mentioned before that you get IV IG every 3 weeks, did they put a permanent cath in you? My hemo thinks thats the best way for me, cuz' he seems to feel I'm "chronic", so we'll see. My neuro is much more upbeat and started me on cellcept this week. Pray for me, please. I'm really in a funk:(








Quote:
Originally Posted by eeyore2 (Post 329871)
I had my Hopkins appoint today. The neuro doesn't think I have MG--they don't know what I have..but nothing straight forward of course. The SFEMG and posititive modulating Abs are non-specific b/c I also have a bunch of other autoimmune and inflammatory markers that are elevated.

They drew a boat load of blood and now I have to see their pulmonary and GI docs..I don't know how long that will take. My J-tube has been clogging or pulling out ~every 2 weeks and my docs down here want me to get one surgically placed...I was hoping to have a solution to this swallowing crap before it came to that.

I'm totally frustrated..and apparently there is nothing that I can do. :(

eeyore2 08-14-2008 09:59 AM
Sorry---I've been off the grid recently...pretty much depressed ab=nd fed up with the whole deal---I did find out that if you ignore it, it doesn't go away.

I hope you are in better spirits today---I'm trying to convince myself that I am:D

I'm 40 and have 3 kids...if it weren't for my awsome hubby I'd have gone nuts by now (not that I'm not close to it)

Have you seen any improvement since your IVIG?

From what I've read on thymectomy, if your have elevated ACh antibodies (which you certainly did) and generalized disease (ie. not only occular) and you are under 65, then you should have it out.

Take care:)


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