Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Under times of stress, I get flares of numbness/weakness, usually to my left leg and to a lesser extent to my left arm. They are rapid in onset. Sometimes they also affect my speech and my facial nerves. Several times they appeared for all intents and purposes to the casual observer to look like a stroke, with the difference being I was fully coherent.
What usually happens is if they give me a steroid burst, the whole thing goes away pretty fast. If not, it can take weeks of longer to get back to normal.
Does this sound familiar?
Does it get worse over time?
What can be done for it?
What can be done to prevent it?
I have been calling these my "Sjogren Strokes" because I don't know what else to call them. But they aren't strokes, even though that is what I usually get admitted to rule out. Now my Mom know the symptoms, and can explain to the ER doctor what it is (because everything I say turns out garbled) and what to do.
Is there any reference material that I can give to my primary doctor or any medication I can have on standby? Once they gave me a steroid shot in the ER, followed by a steroid burst, and that did it, if I could do that at home....
Any comments would be helpful.
Ayla67
What usually happens is if they give me a steroid burst, the whole thing goes away pretty fast. If not, it can take weeks of longer to get back to normal.
Does this sound familiar?
Does it get worse over time?
What can be done for it?
What can be done to prevent it?
I have been calling these my "Sjogren Strokes" because I don't know what else to call them. But they aren't strokes, even though that is what I usually get admitted to rule out. Now my Mom know the symptoms, and can explain to the ER doctor what it is (because everything I say turns out garbled) and what to do.
Is there any reference material that I can give to my primary doctor or any medication I can have on standby? Once they gave me a steroid shot in the ER, followed by a steroid burst, and that did it, if I could do that at home....
Any comments would be helpful.
Ayla67
I started taking "super B complex" vitamins. you can get them in a couple of different brands, i get mine at Walmart. it's all the B vitamins in ridiculously high dosage. your body takes what it needs and you excrete the rest, so you can't overdose.
The benefit of the B vitamins is that they help restore the neural pathways, help your body regenerate itself in general, and help with energy levels. About a month after I started taking the B vitamins, my feet had quit tingling all together. I have not fallen since then either (knock on wood).
Maybe added B-vitamins will help you too, but I agree with the previous posts that you should bring your symptoms to your doctor's attention and if you get brushed off, keep mentioning it to every doc you see until somebody listens! Having stroke-like symptoms is definitely not normal.
I hope everyone's symptoms improve! Please take care of yourself!
The more I read this thread, the scarrier sjogren's seems to get.