recurring GBS

hi robyn & welcome,

the test they should have done to Dx gbs is the emg/ncv as well as the lp. it can come back the same or different. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Robyn,

I may have experienced something similar recently. I had GBS 8 years ago, with no symptoms that I recognized since, except a very, very slight sensation of tingly lips a few times when sick.

Then a couple of months ago, while under a lot of stress, I began to experience what I thought might be the symptoms of GBS again – only it didn’t progress like the original GBS. After a couple of weeks of some growing fatigue, I began to experience some of the neuropathy again – tingling in my toes and feet, some in my hands, especially in my lips and mouth, and some slightly growing weakness. This was clearly to me not my normal state, and like some minor version of what I had experienced with the initial GBS.

My GP sent me to my old neurologist, who fit me in on an emergency basis based on my description of symptoms to my GP, then seemed kinda frustrated when nothing showed up unusual in the nerve conduction test he did. He said he wanted to look for other possible causes for the neuropathy, so ordered bloodwork and a brain/cervical MRI.

About the time I actually had the MRI, the very noticeable neuropathy symptoms faded back away again (they had lasted about 3 weeks), and I am back to dealing with only some fatigue (my energy reserve is still fairly low), and some headaches. I’ve also been taking (though not always regularly) some good vitamins, especially the Bs, and resting as much as I can.

After reading and talking to some people here, I believe that what I probably experienced was the residuals of the nerve damage that happened 8 years ago. I’m coming to believe that the healing that happened after the initial attack does not necessarily return our nerves to their pre-attack state, and that too much stress can break down some of the healing. That’s a non-scientific understanding, though, so I’m still hoping to learn more about what really goes on.

Unfortunately – I’ve had a miscommunicatio with my neurologists office and I still haven’t learned the results of the tests he did a month ago. My life got incredibly busy, and since the symptoms had subsided again, I didn’t push getting the results. I just talked to the office again today, though, and I am waiting to hear back from the doctor right now.

Robyn,

Often, years after the initial onset of GBS, some of us have ‘episodes’ where it feels as if the GBS is returning. This is the case with me, 17 years after my initial onset. I really panicked as I hadnt felt the same symptoms for all that time. I had had minor residuals until then like some pain in my feet, I needed to sleep more than I had before and less stamina than I had had before my onset – however I didnt realize they were residuals. Long story short, after a great deal of research and investigation I found out that there are so many of us that suffer this years and often decades after the event. Our town neurologist wasnt interested and told me that once you ‘got better’ you wouldnt get it again or for that matter, dont ever have residuals. Not many doctors know about it or even want to acknowledge it unfortunately.

Please realize that I’m not necessarily saying that you did have a flare up episode, but they are more common than doctors want to admit or realize. You should obviously keep an eye on it, and if at all possible, shop around for a doctor who may be a little more understanding – BETTER SAID THAN DONE, i must admit. I had all but given up trying, however managed to find someone I had seen previous to my episode (he had moved). I had sworn that if he wouldnt listen and try and understand, I would totally give up as I couldnt take the stress of explaining over and over again and watching that ‘look’ on their faces. Thank goodness I gave it that one more shot, my doctor now is willing to listen to me and try to understand what is happening to my body.

Keep us updated please, and keep posting. Also, you are most welcome to private message me with any questions.

Robyn,

Often, years after the initial onset of GBS, some of us have ‘episodes’ where it feels as if the GBS is returning. This is the case with me, 17 years after my initial onset. I really panicked as I hadnt felt the same symptoms for all that time. I had had minor residuals until then like some pain in my feet, I needed to sleep more than I had before and less stamina than I had had before my onset – however I didnt realize they were residuals. Long story short, after a great deal of research and investigation I found out that there are so many of us that suffer this years and often decades after the event. Our town neurologist wasnt interested and told me that once you ‘got better’ you wouldnt get it again or for that matter, dont ever have residuals. Not many doctors know about it or even want to acknowledge it unfortunately.

Please realize that I’m not necessarily saying that you did have a flare up episode, but they are more common than doctors want to admit or realize. You should obviously keep an eye on it, and if at all possible, shop around for a doctor who may be a little more understanding – BETTER SAID THAN DONE, i must admit. I had all but given up trying, however managed to find someone I had seen previous to my episode (he had moved). I had sworn that if he wouldnt listen and try and understand, I would totally give up as I couldnt take the stress of explaining over and over again and watching that ‘look’ on their faces. Thank goodness I gave it that one more shot, my doctor now is willing to listen to me and try to understand what is happening to my body.

Keep us updated please, and keep posting. Also, you are most welcome to private message me with any questions.

Robyn

You were diagnosed the correct way. Spinal with elevated protien with the symptoms does diagnose GBS.

robyn,

the 2 most important tests to run when looking for gbs is the lp & ncv [nerve conduction velocity]. the lp can give false negatives, but since in your case it didn’t, the Dx should be gbs & the Rx ivig. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Robyn,

Well – I got a return call from the neurologists office while I was napping. The message said “The doctor says all your tests are normal. Call back if you have any questions.”

Ugh. I’ve got a call in to their office to say “yes, I have questions!”. But I’m not sure how far I’ll push it with this doctor, since he’s already told me flat out that he doesn’t believe it could be residuals from GBS, and that the chances that I could be getting GBS again were way too minimal – plus the nerve tests didn’t show anything.

I think I’ll go back to my GP and tell her what’s happened, and see what she says. I need to have another physical anyway, and I can get my blood pressure checked out with her again then. I don’t feel like fighting any battles with this neuro, when my symptoms are fairly nebulous – I just know that this is not what my body was like for the 8 years since the GBS onset, and something has changed. But we’ll see what happens when I finally hear back from the neurologists office – I expect they won’t call me back until next week now…

Robyn,

You asked about numbness… the tingling, numbness, and slight weakness have mostly gone away again. It definitely did not progress like my original GBS (which was still a fairly slow progression, over about 2 1/2 weeks, to a point where I couldn’t step up onto a curb – but not complete paralysis).

The weirdest symptom I had this time was the tingling and numbness in my mouth. It started in my lips, and progressed slowly towards my throat. The tip of my tongue had some numbness, and it all stopped about the time the sense of tingling hit the top of my throat. I had some of that with my original GBS, but I don’t remember it being that much (which is quite possible that I just don’t remember it well).

So right now I have almost no numbness or tingling, except a feeling like it might come back again when I have overdone it (which I did last weekend, chaperoning a middle school band trip to Disneyland). I do still have some on again/off again fatigue.

I have been taking some rather serious doses of vitamins, especially the B’s. I’ve known other people who have had nerve problems get much better on these B’s, so I wonder if they have helped with the symptoms getting so much better. But I can’t make any specific claims – who knows with this stuff?

Robyn,
I had it twice twenty years apart….I am now recovering from the second time. You can read my old posts for the details if you so desire. This week my right foot whcih was only had a little bit of numbness left got worse. Now I am afraid each day because I cannot believe it is getting worse. I am stayiing off of it in hopes it wil repair itself.

robyn,

gbsers can be eligible for disability, but have to jump thru the hoops. time & persistence sometimes needed. take care. be well.

gene gbs 8-99
in numbers there is strength

Robyn,
“I was wondering If anyone has ever tried to recieve their disability for having GBS?”

My GBS started on 13 March 2004. I went to a rehab hospital for the entire month of April. I had an appointment with Social Security on 4 June. I didn’t use a lawyer just answered the questions they asked and listed all the doctors who cared for me since the onset of GBS. In August I received a letter saying they needed more information on my job history. The next letter I got from them in September said I had bee approved and my checks would start in October. I’ve received a check every month since. So yes you should try and don’t give up. Many GBS’ers had to get a lawyer I was very lucky.