[hopeful]

Hi Everyone,
I haven't been on in a while. I have actually been really sick. My neuropathy has become a lot worse.

I don't know if anyone remembers but I have idiopathic neuropathy. I have begun to experience muscle weakness in my legs and arms. The only way I can explain it is when I walk up the stairs I feel like I have to stop hold on and let my legs catch up. (I know crazy description). I can't stand in any one spot for more than many 2 minutes if that long. I feel like I have inflammation everywhere in my bodies.

Last year I was seen at Hopkins and tested by a neurologist, gyn, opthomologist. All said severe inflammation. Of course all is of unknown origin. I also saw a GI doctor where I live and was told severe inflammation by endoscopy. I have had what I think is every test available. Hopkins took 32 tubes of blood. Said possible Sjogrens. I had a positive eye test but negative lip biopsy.

Rheumo says fibromyalgia too! He comes in and presses on the points and says it hurts "You have fibro". I don't believe it. On most days any where you press on me hurts.

My rheumo has me getting IVIG. They seemed to help at first. Once a month. For about 4 days I feel like I have a war going on in my body then I seem to feel better. So he raised them to twice a month. At the same time I got a flu shot in between Rx's. I don't know what caused the flare up. I am a nurse and could have caught a viral infx but the symptoms became worse. So we are going back to once a month IVIG.

I have had to stop working. It was such a difficult decision I think I cried alot for a week before I told them. I have been out about two weeks now. They will have a sub in for me for awhile incase I can come back.

My rheumo has tried to get me an appt with a neuromuscular doctor in Phila. She is no longer taking patients so I am on a waiting list for an appointment.

I don't mind saying I'm scared. I have been fighting this for 4 1/2 years with not many true answers and it is getting a lot worse. I try everyday to be strong. I read alot of Christian aspirations and I think it help. After all it is really in his hands but I know I have to do my part and right now I don't know what else to do.

Sorry for the long dialogue. Two questions,
Does anyone recognize these symtoms as something they have encountered?
Does anyone know a really good neuromuscular doc in Phila on surrounding area. I am willing to go to another state.
Sorry, three questions. Is anyone else getting IVIG for neuropathy that is will to talk to me?

Thanks and have a great Thanksgiving. Other than this I have a lot to be thankful for!
hopeful:
PS meds cymbalta, synthyroid, R Lopoic Acid, tramodol (we did discuss the tramadol and cymbalta before I checked with pharmacy and doctor both said at these levels it is OK). Also, right before this all got a lot worse rheumo started me on Savella I was only on for two weeks and went off.
Any info will be appreciated