Is this GBS?
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November 2, 2006 at 3:05 pm
Greetings everybody, my name is Dave and I was hoping some of you might have some insights or opinions on whether or not I have/had GBS.
My story starts about 17 years ago in January of 1990. At the time I was a very healthy 27 year-old who watched his diet and was nearly fanatical about working out.
About the second week of January I came down with sever, diarrhea along with sever cramping. My doctor thought I had ulcerative collitis and put me on asulfadine and sent me for a sigmoid oscopy. The flexible sig revealed I did have sever ulcerations in the bowel, but a stool sample indicated that the cause was an infection rather than collitis. At this point the Doctor switched me from Asulfadine to an antibiotic and I soon started to feel better.
A couple of days later I got out of bed and nearly collapsed on the floor. My knees had no strength and I noticed I had a tingeling sensation around them (it felt almost like an electric field around my knees, like if you turned out the lights you could see it). I didn’t think too much of it at first thinking it was general weakness due to my recent illness. That was just the beginning though, the tingeling and muscle weakness started to spread to my arms and hands, and eventually within a couple of weeks my entire body from the neck down was numb/tingling and beset with muscle weakness and stiffness. I never became paralized or had trouble breathing, but at its worse I was having considerable difficulty walking and doing things such as combing my hair or holding a glass. The best way I can describe the feeling is that it was like trying to watch a TV show on on old rabbit-ears TV on a snowy channel that had poor reception.
My doctor thought I had MS and sent me for an MRI and set up an appointment with a neurologist. The MRI came back negative for MS, and since I was feeling better neither my doctor nor the neurologist seemed very interested in persuing an answer. As for me, I was so happy it wasn’t MS that I didn’t force the issue and just accepted answers like “There are a million things it could be between being perfectly healthy and MS, but MS is the biggie and you don’t have that so I wouldn’t worry about it.
After about 3 weeks I slowly started to regain my mobility, and I eventually got back to about 98% of where I was before this all started. I did retain some residual weakness in my knees, but its only noticable when I attempt activities such as trying quickly descent a flight of stairs.
Anyway, since then I’ve had 2 or 3 very mild reccurances that always start with the tingling/weakness in the knees and fortunately haven’t progressed much beyond that. The last such reccurance had been several years ago and I thought I was done with it finally, but this past friday I woke up with that old familiar tingling and weakness in the knees again. Its been about a week now and its spread a little further than my past reccurances (both my legs and calves are tingly and my forearms are slightly stiff).
Does this sound like GBS? Based on what I’ve read my initial incident sounds very much like a moderate GBS attack, but the mild relapses have me puzzled. They seem to occur years apart and be much milder that the original. GBS is not something that regularly reccurs if I understand what I’ve read about it, so I’m confused. GBS seems to fit my initial incident to a tee, but I don’t know what to make of these reccurances. Has anyone ever heard of GBS behaving like this, or of anything else that does?
Thanks in advance for any insight, or opinions anyone may have! 🙂
Dave
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November 2, 2006 at 3:14 pm
sounds like it to me Dave. I am only 3 months into this so I am new myself…I am sure others will have more to say about it.
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November 2, 2006 at 3:18 pm
a spinal tap would probably show it, if you have it. but my first spinal tap was normal. three days later they did another one and woo hoo, my protein level was really high. sure sign of gbs. also, emg will show the nerve damage. gbs can relapse in the same way as you’re describing. go to a good neurologist and give him ALL of your symptoms and how often you’ve had them. chances are, he/she will persue the above tests mentioned. good luck.
deb -
November 2, 2006 at 5:46 pm
Dave,
This was similar to me 10 years ago. MY PCP sent me to a neurologist and he quickly diagnosed me by me not having any reflexes and I couldn’t put my finger to my nose with my eyes closed. However, I was out of ‘commission’ for several months and still to this day, have residuals. I would also recommend a visit to a neurologist and tell him everything.
Good luck!
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November 2, 2006 at 6:00 pm
Wow, thanks for the quick replies! I’ve already got a call in to my PcP (waiting for a callback now), and I’m going to request a referral to a different neurologist, one who hopefully will be more agressive in seeking a diagnosis. I wish information had been as easily available back in 1990 as it is now, I don’t think I’d have accepted “Well its not MS so don’t worry about it” if I’d had the information I have now. If it does turn out that it was GBS then I’ll consider myself very lucky that I had a reletively mild case (although it certainly didn’t seem mild when I could barely comb my hair, but compaired to what I’ve read about that others went through it was nothing!). If I had a more sever case I might have ended up severely debilitated considering my neurologist’s lack of interest in finding a diagnosis.
Thank you for your thoughts, I will let you know how I make out.
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November 2, 2006 at 9:35 pm
hi dave & welcome,
as deb says, the lp can give false negatives. a better test is an emg/ncv. do you have gbs? could easily be so. take care. be well.
gene gbs 8-99
in numbers there is strength -
November 3, 2006 at 10:43 am
It sounds like GBS to me as well. As far as the relapses, I wouldnt be too worried about them because they may not be relapses at all. It could be that you overdid it the day before and you are suffering the consequences for a week or so afterwards, this does happen.
With regards to LP its hard to say on that as well. When I was admitted I couldnt walk and had no reflexes but my LP showed normal levels. A couple days later they showed normal levels still and my feet were paralyzed and I had been started on IVIG. One week after my first LP I got my 3rd one and that finally showed the elevated results, so it doesnt necessarily show up right away and if you are having what you think are relapses the proteins may be back down again or if they are that mild the proteins may not be high enough for alarm either.
EMG depends on current condition. From what I hear is that after the patient is considered to have had a complete recovery they do EMGs and they can show completely normal and the patient still have residual symptoms such as numbness and tingling.
So if its after the fact I dont think a test is going to say much. If it is during one of these onsets, then it may but if it doesnt keep in mind that people that have GBS then they can be fine for years and then suddenly they overdo it and they feel many of the same symptoms for a week or so just from flareups, not necessarily relapses. Although, yes a relapse is possible, the current stats show that a person who has previously had GBS has a 3% chance of another occurance.
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November 3, 2006 at 1:23 pm
I had an emg/ncv done at the time of diagnosis and also had one about 3 years ago which still showed damage. Again, I think my case would be classified as mild. But this still so totaly sucks.
Dave, that’s why many of us are still hanging around here for daily support with the residuals and to help the unfortunate newbies.
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November 3, 2006 at 4:51 pm
Hi Dave, it could be gbs or cidp. do these relapses come on quickly, for example anywhere from 30 mins to a few days, or is it slow, steady and takes longer to come on? gbs is acute onset-quick and not sweet, where as cidp is slow and more relapsing or chronic onset. do you notice any type of trigger for your onset-too much activity, food poisoning, viruses, or the such?
i have gbs relapsing/remitting type, with acute onset relapses, usually anywhere from 30 mins to 2 hours. lately i have noticed activity brings on a shorter paralysis event, and illnesses can start an event that hospitalizes me.
do you have pain in between your down times and with your exerbations?
its also a good idea to keep a journal, it will show your dr if there is a pattern or trigger to set off your tingling feelings. take care. -
November 6, 2006 at 11:25 am
Angel,
I would say it progresses fairly rapidly. Although I have not had a flair-up of a severity anywhere near the initial one I can definitely say its something that progresses over a few days to a couple of weeks rather than weeks to months. The odd thing is that I have been completely symptom free for quite some time (at least about 10 years since I have not had a flare up since my wife and I have been together and we’ve been together for about 8.5 years). I can’t say its triggered by activity. I exercise fairly consistantly and have not done anything “extreme” anytime in the recent past that would have caused this exacerbation. If It were being triggered by extreme activity I probably would have had an attack about a year ago when my basement became flooded and I spent an entire day bailing water out of my basement. I could hardly move for 3 days due to general muscle stiffness, but I didn’t notice anything out of the ordinary.
The differences from my initial experence and the subsequent flare-ups seem to be mainly in the severity and the fact that the initial flare-up was preceeded by a bowel infection that mimiced collitis. The commonalities are that they all seem to begin with tingeling/weakness in my knees and calves. Sometimes it spreads to my arms in the form of weakness and stiffness, but its always worse and more noticable in my legs where it starts. Its always symmetrical in both sides of the body, and it always works its way up as it progresses.
My current occurance started a little over a week ago with the tingeling in the knees. I am currently experiencing the tingling/weakness in both of my legs, not to the point where I’m having difficlty walking but enough to make me descend stairs carefully (its easier gong up stairs than down) and avoid carrying a heavy load down stairs. I am also experiencing stiffness in my arms, and the symptoms seem to be similar to carpal’s tunnel. The stiffness is more noticable in my right arm than my left, but thats probaly not surprising since I’m right handed and use my right arm more. The symptoms seem to worsen for a while if I do anything streneous in the part of the body I was using (legs, arm, arms, etc.) and then improve with rest, although the general tingling and stiffness remain.
Anyway, I have scheduled apts. with my PcP and with a neurologist (not the guy I saw the first time!). I’m fairly certain there’s a good chance it could be either some sort of Perepheral Neuropathy or something that attacks the Spinal Cord like Transverse Myelitis. Of course a patients self-diagnosis and 25 cents won’t get you a cup of coffee, so hopefully this new neurologist will be more agressive in finding a diagnosis than the last one was. I know one thing, I wouldn’t want to be the doctor who says to my wife “Well its not MS so don’t worry about it…” 🙂
Thanks again for all of your support and comments, even if this doesn’t turn out to be GBS it has been very helpful to have a place to vent to people who have experienced similar problems!
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