I Had Gbs In 1984 When I Was 19

I had GBS in 1984 when I was 19 - I was paralyzed from neck down, in hospital about 3 months ICU for few weeks but not intubated, inpatient rehab another 2-3 months. I have had some lingering issues but the issues seem to be getting more pronounced. I have asked doctors over the years if some issues could be related to GBS but doctors have always acted like it was ridiculous to even suggest it however now I think my problems are residual from the GBS which is why I have joined this group to see if others have same problems like feet, legs issues, strange sensations like something crawling under my skin, etc.
Spaigec Spaigec
46-50, F
8 Responses Jun 4, 2012

How are you doing now

I was very fortunate to connect with a neurologist who is an international expert with vast experience with Myasthenia Gravis (MG). After almost 4 years of treatment I now know I have MG, Narcolepsy w/cataplexy, sleep apnea, hashimotos, hypothyroidism, and numerous other less serious diseases/issues I cant think of at the moment. It appears the GBS is unrelated but for the fact that it seems very likely that I have a genetic profile that predisposes me to very serious autoimmune issues. I have been and will forever be on immune suppressants (prednisone/Cellcept for now), 2 days of IVIG infusions max dose every 3 weeks but I am able to work from home part time.

From my experience over the last nearly 4 years, The most important thing is to get a VERY good neurologist that you are comfortable with and that is an EXPERT in your illness.

thanks are you in pain

pain related to neuro issues is tolerable bigger problem is weakness, breathing issues

Hi sorry it took so long to write...I have had a crazy 3 months, been very sick and in hospital for a few days. turns out I have a very rare very serious neurmuscular illness called Myasthenia Gravis. I have thought of you several times in that I said I would get back to you.

I had GBS in 1984...was on vent for two months. All I could move was my eyes. Had plasmaphoresis several times. They had me in the water tank everyday which felt so good. My whole body was racked with pain. I finally got to rehab and learned to move everything again. They never taught me how to run and have no earthly idea how to run. Weird! I recovered about 75%. I'm now 72 and find the weakness I had in my shoulders and hips is getting worse. I contracted Hep C from a blood transfusion which I am battling with now. Life goes on....

Yes, please share what the professor has to say. It would be great to find someone who is more engaged about post side affects as a result of GBS. I agree that our physicians do not have a large knowledge ba<x>se when it comes to GBS, interpreting walking again as a full recovery, discounting post complaints we have shared with them over the years. <br />
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I have become insistent recently which resulted in MRIs of neck and back to see how if that is related to to the pain and periodic numbness in my leg and feet, all left sided. The pain and periodic numbness in two of my toes has been since GBS. Although the MRIs showed stenosis in the neck and some bulging discs contributing to my symptoms, most telling was an xray of my back standing up. I highly recommend the standing up xray of your back. For me it showed a real obvious, not slight, curvature of the spine so I have scoliosis. Is this a result of GBS due to either paralyzation or because I was 13 with bones still forming when I had GBS? Such a simple X-ray which gives a clear visual that I have issues. Treatment for the above is with steroids or surgery and of course do not want major surgery realizing the severity of risks involved. I have had one series of injections but that has side affects so I do not wish to continue to temporarily fix one body part at the risk of another. Even yoga was not recommended. I share this with you because I'm curious what a standing back xray would show of your spine alignment if you have not already had one.<br />
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Happy 4th to you as well. I will look for a follow posting later in the mo after your visit.

Hi Cajonian,<br />
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Sorry I didnt respond sooner. I believe I did not have any respitatory/flue sickness prior getting GBS but do remember them asking me about it at the time. When I got it I was actually into body building (not with steroids but working out with weights alot, I was in very very good physical condition) and I was almost done with my first year of college in Gainesville (from Fort Lauderdale)...I remember the plasmapherisis treatment was new at the time and my insurance would not cover it so I never had anything like that...not sure if I was given steroids or not BUT I do have appointment to see Dr. at University of South Florida in Tampa in July and I am eager to see if he will be able to definitively determine if the issues I am having now are related to GBS and if there is anything that can be done to minmize issues (although I get the impression probably not but at least nice to know the problems arent all in my head - lol). <br />
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I think that there isnt any information about long term effects because there arent many long term survivors (relatively speaking) out there. Plus it seems to me that the actual illness (severity/length of time) was minimized with plasmapherisis so even fewer people who had total paralysis like we did. I also have learned that there is a 'residual-type' illness experienced by polio survivors many years (sometimes as long as 50 years) later that at least to some extent, parallel the complaints we have. Not sure if any applicability to GBS but I never knew an illness could cause another illness so many years later. Also it seems to me that the real basis for doctors telling GBS patients they fully recovered if really not ba<x>sed on anything scientific but rather on the basic fact that after a certain period of time by all outward appearances (resumption of movement...) we were recovered. <br />
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I will post again after I see the professor in Tampa. Have a happy fourth!

Thank you for your post! I believe there is a university in PA that is doing a research project but they wanted me to pay for having my blood drawn and all costs related to the research .... No thanks! I don't believe the pain will ever go away but I am just seven months into this nice little thing they call GBS.

Hi. Thanks for sharing. I have experienced nearly all the same issues you describe and I also contracted hypothyrodism (my early 40's). Unfortunately the problems are becoming more of an issue/are starting to affect me more often. I have been in touch with a neurologist at the University of South Florida in Tampa who I was referred to by a research professor from Minnesota (not sure if that was the state or not) who used to study GBS/residual issues but now limits his research to overseas who I am going to see as soon as my schedule permits (I live 3-4 hours drive). <br />
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FYI I went to a local neurologist a couple years ago who did the most basic exam and literally stuck a pin in the bottom of my foot and since I could feel the pin, he said I had no problems and acted as if I was crazy to suggest problems may be related to GBS. <br />
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Wouldnt it be great if they could figure out cause/solution for these problems? It seems there has not been much research into even acknowledging the problems much less determining cause/solutions. Almost all of the information/websites I have found all focus on dealing with the actual illness/short term issues but not so much info on residual. I think probably because after being paralyzed we consider other issues are tolerable and we just "deal with". <br />
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What state do you live in?<br />
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I was having trouble sleeping and was sort of excited to see your post so I wanted to respond but now I think I will go back to bed. Thanks again for sharing.

Sorry for the delay in responding. I had to reset passwords.

That is interesting as well that we both have hypothyroidism. When I had GBS, the only treatment was oral steroids so Im sure that caused some of my issues since I was on it fo awhile.

I agree there is nothing on residual or long term symptoms. I posted google alerts to get weekly reminders of atricles related to GBS but they are mostly newly diagnosed cases. I agree having an illness like this you feel grateful and just tolerate or deal with it that few have come forward to express their long term concurs.

My brother lives in Tampa, I live in California. It would be great if you could meet with the research professor. Any research on the subject would be helpful.

Curious, what happened be fore you got GBS? I lost my father a couple of months prior but also seemed to get tonsillitis and bronchitis quite often when younger. GBS followed both so was it related in any way to infection or the stress of losing a loved one?

I had GBS in 1971 when I was 13 years old. I was paralyzed from my lips and tongue down but I was not intubated either although I was not expected to live. I stabilized and then after 3 mo of completed paralysis I gradually got better with rehab,etc. Like you, I have always had misunderstood, lingering issues which seem intermittent but triggered by certain activity. My left toes go numb periodically, usually after walking, then it goes away. I cannot stand in one place like long lines or when you prepare a big holiday dinner in the kitchen all day without significant pain in both feet, hobbling to a chair...my great reward of a needles and pins sensation. Standing is absolutely the worst. And yes, sometimes it feels like something is crawling under the skin on my legs. My left leg falls asleep if sitting with feet on the ground too long. Physicians seem to think it is related to my neck or back but then why have I had it since being paralyzed. I seem to fatigue easy at times but push through because I'm determined. It is nice to hear someone else believes it to be GBS as well. Same reaction from physicians who always believe it is something else. As an adult I contracted hypothyroidism. I was told if you have one autoimmune disorder, you are more susceptible of contracting another. Hope this helps for others to compare...maybe between like-minded people, we will enlighten our medical communities.