Anyone have positive ANA years after having GBS.
AnonymousJuly 13, 2008 at 11:39 am
I had GBS over 30 years ago. My paralysis was total. I did recover but have had numbness, pain, and odd sensations, especially the last 4 to 5 years. I am 51. The neuro said I had nerve damage. Anyway, a few months ago I developed iritis, an inflammation of the eye. Blood work showed a high ANA indicating an autoimmune disorder. One of the antibodies for scleroderma came up. I was terrified. Rheumatoligist says I don’t have it and test is not conclusive, but I am still worried. Has anyone ever had positive ANA after having GBS?
AnonymousJuly 13, 2008 at 9:12 pm
Thanks for the reply. I had iritis a few months ago and that is why they did testing. When I had GBS I had some double vision. Right now I have pain in hands, feet and sometimes in upper back. All tests for Rheumatic deseases were negative, including tests for inflammation. Rhematoligists thinks my pain is from neuropathy ( which was diagnosed by a neuroligist in my feet and lower legs) and osteoarthritis. He doesn’t put much stock in ANA tests. It really upset me because I knew someone who died from scleroderma. I also get pain in muscles of arms and legs at times and have strange sensations in feet. My really peculiar GBS “residual” is a feeling of vibrating when I am lying still. When did you have GBS?
AnonymousJuly 14, 2008 at 12:28 am
I wrote you a long post but it isn’t showing up here. I need to call it a day as I have to be up early for work but would like to hear more of your story as I am having a lot of the same things happening 25 years later. I am 54. I was totally paralyzed and on life support. I was pretty well going along with minimal residuals then about 4-5 years ago things began to happen.
I now get tingling and numbness in my hands and feet, fingers and toes are really bad, electric shock sensations, creepy crawly feelings, muscle aches and cramps with weakness that comes and goes, am hyper sensitive (ie, touching my face with my fingernails can feel like razorblades) and the list goes on. I have a lot of pain as well in my legs and feet/hands. I twitch and jerk, especially at night, and now I am having trouble sleeping. I get ruptured blood vessels in my eyes and I will wake up some am’s and my eyes look like they could drip blood they are so red.
Anyway, would be interested in sharing stories with you as it is hard to find a dr who believes residuals can surface so many years later.
AnonymousJuly 14, 2008 at 9:48 pm
I have a question with regards to you mentioning the eyes and scleroderma (my aunt died from this about 10 years ago) in your post. I was diagnosed with GBS in February, and my eyes and face are still most affected. I am lost on the connection you mentioned. Any help would be great! Thanks
AnonymousJuly 14, 2008 at 11:35 pm
I had an inflammation of the eye called irisitis, Sometimes it is a sign of an autoimmune desease. They did a bunch of blood tests and an antibody that sometimes is linked to scleroderma showed up, however it also could be rheumatoid arthritis or lupus, or nothing at all.
I had a friend that died of scleroderma 20 years ago, but from what I have read, they have made great strides in just the last 5 to 10 years in fighting it.
Take care, Susanne
AnonymousJuly 15, 2008 at 12:04 am
I wrote you this morning and it is gone now, so I will try again,
I had GBS in 1976, when I was 19. Like you, my paralysis was total. I was on a respirator, couldn’t talk, swallow or anything. I was in the hospital 4 months and went home in a wheelchair. Eventually I recovered and aside from an occasional numbness in my feet and weakness, I was pretty close to normal. About 5 years ago I got a persistent tingling and weakness in my feet, and feelings of bugs crawling under my skin on my lower legs. I also began experiencing traveling muscle pain in my thighs, arms, back. Today my feet can hurt so bad that I can barely walk and I have arthritic type pain in my hands. I also experience bouts of fatigue and sleeping problems. My oddest symptom is feeling like I am vibrating when I am lying perfectly still. 5 years ago, when I went to my neurologist, she ran nerve conduction studies and said I had nerve damage in my feet and lower legs, probably from GBS. She explained that they really haven’t studied the long term effects of GBS, especially in those who had it as bad as we did.
Recently I got an eye inflammation and they ran blood tests that showed I have an autoimmune response going on. I wanted to know if anyone else out there had a positive ANA (autoimmune blood test) because GBS is an autoimmune disorder. I swear that I get flare ups of GBS, what the doctors like to call “residuals.” I am worse when I am stressed, ill or tired.
I know this was long, but please reply. I know what it is like to feel alone and frustrated with this happening after so many years of feeling pretty good.
Take Care, Susanne
AnonymousJuly 21, 2008 at 1:33 am
I did not have as severe a case of GBS as you did but it was in 2001. was not correctly diagnosed then but now as they looked back it was. About 3 years ago i was exhausted and had tingly feeling in my legs and feet and pain. first told chronic fatigue syndrome then in sept of 06 told fybromyalgia after my test was pos. ANA which with the triggerr points and that test fybro is autoimmune and i also had restless leg syndrome (the creepy crawly feeling in my legs) but meds helped with that. But unfortunately after I had to have surgery in mar 07 I ended up in a wheelchair and may 07 diagnosed with CIDP and since that neuro left I have yet to get treatment. Anyway sorry offtrack but yes I did have pos ANA after full recovery in mar02 frm gbs.
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