Am I Crazy??

I had GBS 20 years ago and that is the way my symptoms started back up. I went to the Neuro and he ran every test for different diseases. All them were normal and he said that it was just residuals from the GBS. That may be the same for you.

It sounds unlikely that you are getting GBS again as your weird symptoms started in Feb. GBS’s attack course lasts for up to 4 weeks, and then stops so the symptoms dont get worse after that. What you are experiencing sounds very much like residuals and unfortunately IVIg or plasmapharesis wont help with the residuals. Many of us are on meds like Prosac or Cymbalta to help with pain issues as these medications do help block pain. I will post some links for you to read which may help you if you havent seen them before. Just copy and past them into your web browser.

Also, if you contact the Foundation and ask to be put on their mailing list, they will send you newsletters about 4 times a year with very informative articles in them.

[URL=”http://www.angelfire.com/home/gbs/whatsinaname.html”]http://www.angelfire.com/home/gbs/whatsinaname.html[/URL]

[U][COLOR=#22229c][URL=”http://www.jsmarcussen.com/gbs/print/residual3.htm”]http://www.jsmarcussen.com/gbs/print/residual3.htm[/URL][/COLOR][/U]
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[URL=”http://www.jsmarcussen.com/gbs/print/fatigue.htm”%5D%5B/URL%5D

JB,

Unfortunately it is difficult to give you a definitive answer. However, the answer is …. yes, you could be getting GBS again ….. or ……. you could be having residuals come on after the stress, pluss ill health etc. Many of us suffer symptoms when faced with stress or when our bodies have been through illnesses and are weaker. I also thought I had fully recovered, but almost 18 years later I thought I was getting it again. It was because of these residuals coming back with vengeance that I started to do research, as none of my doctors would admit that there there was such a thing as residuals, or post GBS. Thank goodness for the forum, as I found so many people suffering the same thing as me decades later.

Unfortunately all I can suggest is that you keep a close eye on the progression. If you feel it traveling upward and possibly start effecting your breathing you should definitely do something fast. Would it at all be possible to call one of your doctors and discuss this over the phone with them and see what they suggest? Remember, not many docs know much about GBS, so unfortunately you have to be your best advocate.

JB,

I too thought that I had had a “full” recovery from GBS 8 years ago, until recently – and I’ve heard that from many others here, as well. Stress is what was the big culprit for my relapse of residuals, I think. Others have stories of problems after a tetanus shot, as well, I haven’t had that too…

Other people probably have better ways to describe residuals, and I’m not sure I’ve gotten a really good understanding yet… I think “residuals” is used for more than one concept – it might be the obvious ways that nerves did not heal again after the initial GBS event – the things that people still struggle with, often visibly, after the acute phase. But there are also those people who seemed to heal just fine after GBS, but years later begin to experience problems. It seems that when our nerves healed, they didn’t necessarily return to their original “pre-attack” state, and that subsequently (especially under stress), some of that “healing” can “wear down”. This is where my thinking gets fuzzy – I think I’m understanding that it doesn’t necessarily mean that our nerves are deteriorating more than they did in the original GBS attack, but that we are getting to experience some of the original damage (?). Then again – some people do seem to have more progressive damage, as well, so I’m not super clear about what’s really happening. People here are comparing this to the Post-Polio condition, which went unrecognized for years.

Most of my tougher to handle symptoms (more pronounced tingling, some weakness, more severe fatigue) have subsided again, right now it’s mostly minor aches and fatigue – unless I overdo it. This all started in the last three months for me, I’m still trying to understand what’s going on and what I should do. Everyone here has encouraged lots of rest, and I’m seeing for myself that they are really right, rest is key.

I just wanted to say hi and that you’re not alone. It seems like there’s a new person every few days, asking about residuals coming up years later. You may have more going on than that with the tetanus vaccine as well, that’s something I don’t have experience with…

Chris

Hi JB,

Are we going crazy? I think so… We have been through a lot in the past with the original bout of GBS and it scares us horribly to think anything could be hitting again. I understand.

I did exactly what you are thinking of doing – going to a new neuro. My PCP doc easily offered the referral. I did find out my vitamin B12 was low and that could have been causing some of the tingling in my feet. Taking vitamins/supplements and feel a tad better. I even said to the neuro “I just want to know if I am crazy” and he said that there are certainly some psychological components going on. So I took it as, YES, I am a bit crazy, but that is part of my nature.

So after the neuro visit I felt a little bit satisfied, but more distressed over the $1,000 I had to spend because of my medical insurance deductible.
The neuro finished with telling me to follow up with my PCP doc.

I hope this info helps. Feel free to ask any questions.

I don’t think you’re crazy at all! I think you’re stressed and frightened. For me the residuals (tingling, weakness, almost complete numbness, other abnormal sensations) ALWAYS get worse with stress and fatigue. The residual fear from having already had a serious illness and then feeling these weird things again only compounds the stress for me. Heck, I know how bad something can get -it’s happened to me! (and the rest of us) Ali and I were talking a couple of days ago about how we’ve all earned the right to be hypochodriacs. So even if there really isn’t anything wrong, of all people we certainly have earned the right to be a bit hyper-vigilant with our health and our docs darned well better listen to us better.

That being said, you definitely need to be carefully checked and monitered. Also- if you’re having anxiety issues the Prozac could (could!) be making your anxiety worse. Just watch and be aware. If doc is simply concerned with anxiety rather than depression, maybe a short course of anti-anxiety meds might be in order instead.

Anyway, you’re not crazy and you’re definitely not alone! Keep us posted and hang in there!