Re: Sarcoid problems/questions

[Guest guest]

Connie,

This really concerns me as it is all the signs of a stroke. Depending on where it is happening in the brain, it can effect your vision. Get in and see the Ophthalmologist, and they can do a visual field test that can show them if parts of the optical cortex are involved.

If this happens again, get into the ER immediately, don't "wait it out" because if it is a stroke, they can treat you with a "clot buster" drug that can break up the clot and that way the permanent damage is many times reversible.

The neck problem is probably not helping anything, and it too could press on nerves that control the body issues-- generally tho, it's not going to effect the eyes. (The blood sugar will though.)

They do need to find another med-- pred with your fragile diabetes is not a good mix.

I'll try to find the article I have for the 7 signs of stroke.

Take care,

Tracie

NS Co-owner/moderator

Subject: Sarcoid problems/questionsTo: neurosarcoidosis Date: Wednesday, March 25, 2009, 5:14 PM

Guys, I have been in a flair like many of you for months now. The problem being I am severely allergic to sulfa drugs so wonderful plaquenil is off limits, and alot of the other meds including MSM cause me problems. Heres the questions, I have been on long term prednisone; (over 4 years) and about a week and a half ago I suddenly got where I was having alot of difficulty speaking, and saying words correctly, my arm seemed to be going numb more than usual (I have a severe neck problem that will require surg in the next couple of weeks, so I can't tell exactly what bothered the arm.) Then a week and a half ago my left leg stopped working right, it's weak, I walk funny, and I can't do different things with it that I should be able to do. I walk C shaped toward the left. The neurologist seems to think that I have either had a stroke, or my sarc is up to no good. Also, suddenly my vision has gone to pot. I

desperately need to keep working.

Please tell me exactly what you think, I despise being in the dark, and can deal with anything I can face head on. Please advise if you know of anything that maybe I could replace the pred with that doesn't have sulfa in it. The last time I went to my rheumatologist my joints were so painful I was having trouble walking. My rheumatologist just looked at me and said, "I just don't know what do to with you", I told her, I haven't given up, why should you". (I recently had to be on higher dose pred, because of the joints, and my sugar got so high my aviva wouldn't read it it just said "HI" which means over 600 according to the company, and I had a well of a time getting it down with my long and short acting insulin. I weaned back down to the lower dose I normally take because of the sugar.

I hate to be sound like such a "gripey" and I do know you are all so sick; so there's no hurry to answer, just sometime when you feel like it and get a chance; I understand.

I just need an idea of what to do, and lately my doctor's haven't been real helpful.

Thanks so much for everything, Connie

[Guest guest]

Thanks for taking the time to answer Tracie, the eye thing is starting to scare me. I called my HMO and found an opthalmologist today, I have an appointment tomorrow. I realized today I can't read road or street signs even with my new glasses on until I am on top of them. A week ago I didn't need my glasses at all to drive, and could see as clear as day. The worst eye is on the same side as the leg that isn't working right. I can hack the leg thing, but the eye thing is just too weird.

I found out that the really great neurologist I had, that went to Boston is back in Florida and only about an hour and a half away. I think I am going to try to contact him tomorrow. The neurologist that is seeing me is so nonchalant about everything, yet he hands me a paper for a CT Tuesday with the diagnosis CVA sx. I'm trying not to be negative but massive strokes run in my family, that's what caused my grandfather's death, and my father had multiple strokes (4 major and too many little ones to count). I have a tremendous fear of ending up like my father did before he passed away.

Thank you so much for all your help, it means so much.

I will go to the ER if anything else happens, I just didn't recognize what was happening to me. Dumb I guess, if anybody should have known, it should have been me.

Thanks again, Connie

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Subject: Sarcoid problems/questionsTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, March 25, 2009, 5:14 PM

Guys, I have been in a flair like many of you for months now. The problem being I am severely allergic to sulfa drugs so wonderful plaquenil is off limits, and alot of the other meds including MSM cause me problems. Heres the questions, I have been on long term prednisone; (over 4 years) and about a week and a half ago I suddenly got where I was having alot of difficulty speaking, and saying words correctly, my arm seemed to be going numb more than usual (I have a severe neck problem that will require surg in the next couple of weeks, so I can't tell exactly what bothered the arm.) Then a week and a half ago my left leg stopped working right, it's weak, I walk funny, and I can't do different things with it that I should be able to do. I walk C shaped toward the left. The neurologist seems to think that I have either had a stroke, or my sarc is up to no good. Also, suddenly my vision has gone to pot. I

desperately need to keep working.

Please tell me exactly what you think, I despise being in the dark, and can deal with anything I can face head on. Please advise if you know of anything that maybe I could replace the pred with that doesn't have sulfa in it. The last time I went to my rheumatologist my joints were so painful I was having trouble walking. My rheumatologist just looked at me and said, "I just don't know what do to with you", I told her, I haven't given up, why should you". (I recently had to be on higher dose pred, because of the joints, and my sugar got so high my aviva wouldn't read it it just said "HI" which means over 600 according to the company, and I had a well of a time getting it down with my long and short acting insulin. I weaned back down to the lower dose I normally take because of the sugar.

I hate to be sound like such a "gripey" and I do know you are all so sick; so there's no hurry to answer, just sometime when you feel like it and get a chance; I understand.

I just need an idea of what to do, and lately my doctor's haven't been real helpful.

Thanks so much for everything, Connie

[Guest guest]

Thanks Marla, I am trying to stay positive, & keep my mind off it till I have some kind of answer. I know worrying won't change a thing, but sometimes it is really hard not too. You all have your own personal battles I know, and that makes it even more kind and precious that you take the time to encourage me. It is appreciated more than you will ever know. Connie

Guys, I have been in a flair like many of you for months now. The problem being I am severely allergic to sulfa drugs so wonderful plaquenil is off limits, and alot of the other meds including MSM cause me problems. Heres the questions, I have been on long term prednisone; (over 4 years) and about a week and a half ago I suddenly got where I was having alot of difficulty speaking, and saying words correctly, my arm seemed to be going numb more than usual (I have a severe neck problem that will require surg in the next couple of weeks, so I can't tell exactly what bothered the arm.) Then a week and a half ago my left leg stopped working right, it's weak, I walk funny, and I can't do different things with it that I should be able to do. I walk C shaped toward the left. The neurologist seems to think that I have either had a stroke, or my sarc is up to no good. Also, suddenly my vision has gone to pot. I

desperately need to keep working.

Please tell me exactly what you think, I despise being in the dark, and can deal with anything I can face head on. Please advise if you know of anything that maybe I could replace the pred with that doesn't have sulfa in it. The last time I went to my rheumatologist my joints were so painful I was having trouble walking. My rheumatologist just looked at me and said, "I just don't know what do to with you", I told her, I haven't given up, why should you". (I recently had to be on higher dose pred, because of the joints, and my sugar got so high my aviva wouldn't read it it just said "HI" which means over 600 according to the company, and I had a well of a time getting it down with my long and short acting insulin. I weaned back down to the lower dose I normally take because of the sugar.

I hate to be sound like such a "gripey" and I do know you are all so sick; so there's no hurry to answer, just sometime when you feel like it and get a chance; I understand.

I just need an idea of what to do, and lately my doctor's haven't been real helpful.

Thanks so much for everything, Connie