New Member 27 years of GBS

Martin,
Nice to meet you. Sorry this happened via the service and sorry they deny it. My 11 y/o son has cidp. Who knows how we got it, surgery, chicken pox vaccine, bee stings?
Now that you know that we are here, visit often. People are kind and considerate here and will be responding to you shortly.
Dawn Kevies mom

Martin,
Sorry that you got GBS at such a young age and have had to live with it so many years. Are you on any medication to help you? I take lyrica to help me. There is other medicines that others will tell you about.
Welcome,
Take care
Shirley

Hi Martin—-WELCOME. I have cidp, so I have the nerve pain, numbness, tingling, chronic fatigue that you have. Did you flip from acute(gbs) to chronic(cidp)? I take Neurontin for my nerve pain and it helps. Other meds are out there, and what helps for one doesn’t another, but it would be good to be on something to help your pain so you can get through the day. I will say this about those military immunizations-they are brutal-when my son was deployed to Afghanistan, he had to have additional shots for overseas and he got so sick–I thank God he recovered after a few days and didn’t have all the trauma that you have suffered. Write anytime to say hi on your good AND bad days, there are so many good listeners and advisors on this forum. Emma

Hi Martin,

It is 25 years this past month since I had GBS. I too have had a good life but you are right in saying it hasn’t been without it’s challenges. I took about 3-4 years to completely recover, and my residuals were minimal. In the last few years, they have increased to the point where they can affect my ability to cope. But I am hanging in there and working hard to stay well. I am glad you found this site. I love coming here and feel so good to have a group of friends who understand what I am feeling.

Again, welcome and I look forward to seeing how you use your experiences to help others who are facing life after GBS.

Martin,

I too was 19 when I had GBS. That was 32 years ago. I recovered pretty well, but have experienced a lot of problems the last 5 years. I remember my mother in law, who was a nurse when I was diagnosed, looking up GBS in the hospital library and finding one paragraph on it. We have come a long way.

Having the internet has been a godsend. When I saw that other people were experiencing the same things that I was, I literally cried. I have a pretty high tolerance for pain and take Advil, and my neuro gave me neurontin that helped for a time but I had a reaction to it. I recently had to go to a rheumatologist and he told me to notice the pain I was having for a week. I was stunned to realize that I was always in pain. My feet, hands, back, arms. legs; they all hurt. I have been in pain for so long that it has become normal.

I’m glad you found this site, but I am sorry that you had GBS. But. look on the bright side…..you survived. Since having GBS, I raised a family, had a successful business and now have grandchildren.

Susanne

Hi Martin
Welcome to the family. I was diagnosed with GBS in 2003. My daughter joined the Army National Guard in 2007 and they would not allow her to take the flu shot, the flu mist or to give blood just because I was diagnosed with GBS. This tells me that the Army knows something…But regardless, we are glad you have found us and hope that you can get a lot of help here.

Take care

Sherry

Hi Martin,

Another welcome to the forum. This place has been a Godsend for me in talking with others who understand. Most of my doctors do not have any idea or believe my residuals. Stay with us and you’ll find you can help someone too.

Happy resting,

Hi Martin, I also want to welcome you. AND admire your strength and everyone on this site’s strength dealing with this strange illness. I also take Neurontin for pain and Alprazolam for stress and muscle pain. Both seem to work for me. Our good friend Gene, always advised us to rest! That helps also. It was not very reasuring for me in the hospital when one of the reidents came in to see me and said, I looked up GBS on the internet….I had to laugh! I agree with Stormy, the army knows something. Maybe you need to be a “squeaky wheel” and keep on the army about your illness.
Welcome!

Hi Martin,
I too was 19 when I had GBS 1985/86 – was on the vent with a trach for 6 weeks. While still in my 20’s and early 30’s, I lead a somewhat normal life, not realizing some of the things I felt were residuals. After 35 however residuals became far worse, and this site was a life saver for me many years ago. Welcome!

Martin,

Have you ever filled a claim for Disability with the VA?

I contracted GBS when I was in Basic Training at Fort Leonard Wook in 1988.

The VA accepted my claim for Disability in 1992. Last year I ask for a reevaluation, and my Disability was increased.

Her is my story:

I contracted GBS in 1988. I was in Basic Training with the US Army and got sick about 2 weeks after starting training. I did go through the entire regimen of shots and vaccinations when I began Basic Training. It took nearly 2 months to finally get a diagnosis of what I had. I went untreated the entire time while I was under the initial GBS attack. When I started Basic Training I was able to do 25 push ups, but by the 3rd week I was unable to do any. I remember having difficulty brushing my teeth, buttoning my shirt, and tying my shoes. I was mostly affected in my upper body. I did have trouble with severe weakness in my legs. I was never hospitalized.

I was finally able to go back into Basic Training in September of 1988. I still had extreme difficulty running. I graduated Basic Training in November of 1988 and went on to serve 4 years in the US Army. I always had physical issues especially with running, but somehow was able to complete my 4 year commitment.

I filed an initial VA Disability Claim in 1992. The VA came back with a rating of 10% for basic nerve damage. I was satisfied with the reward. I knew I had physical issues, but considered them minor.

I never followed up on my condition or sought additional care or treatment until 2007. My condition was fairly stable and I was willing to deal with my ‘minor’ disability issues.

Beginning in 2007 my physical condition began to significantly deteriorate. I was having a lot of problems with my hands and arms. Lots of weakness and numbness. I reopened my VA Disability Claim in the Fall of 2007. They sent me to do a complete Neurological Exam which included Nerve testing. I was found to have severe entrapments and neuropathies in both my arms and legs with the arms being most severe. They classified my case as now being CIPD.

The Spring of 2008 the VA increased my Disability rating to 50% for my upper body and rated me at 0% for my legs

I did start IVIG treatments in April 2008. After two IVIG treatments I contracted Meningitis. I was hospitalized for 5 days. I was discharged for 4 day and then was hospitalized again for being Neutrapenic for another 2 days. So this ended my IVIG treatments.

I am weighing my options on whether or not to try another treatment or learn to live with what I have.

Recently my legs have significantly deteriorated. I have a foot drop, numbness, and weakness in my right leg. VA has provided me with a brace to helps with the foot drop.

I am once again opening my VA Disability Claim to address the issues I have with my legs.

I continually suffer with severe fatigue, hip pain and back pain (due to foot drop), and chest/breathing pain. I have been tested for asthma, but the test come back negative. I am assuming that it a GBS/CIDP issue.
I am having issues at work. I work for the USPS. I can no longer do my job fully. I am limited in what I can do. I have ask for special consideration, but they are very reluctant, since my conditions was acquired OFF the job.

My fight continues at work. I do not know how it will turn out. I do have concerns about eventually losing my job. If my physical condition continues to deteriorate rate at the same pace it has over the last 18 months it is only a matter of time before I will not be able to work anymore.

I just wanted to share my story and hear what other have to say.

That’s for reading and hanging in there.

Your new friend,

Chris

My story with GBS started a very long time ago. I had GBS back in
1977(nothing to do with vaccine) at the age of 4. Although I do not
remember much about the attack, I have hear the stories from my
parents and read others. Back at the time of my attack Doctors in my
area had no idea as to what was going on with me. I can remember at
the begining before total paralisis when walking was very difficult to
do, the nurses at the hospital would make me walk to the laundry
closet to get clean gowns because I had lost control of my “bodily
functions” I remember them telling me that I was just doing this
for attention.(boy were they sooo wrong) my parents ended up taking
me to the University Hospital about 3 hours away from my home. Which
there the did finally come up with a diagnosis. Which made me the
first child in this area with GBS, and the only other GBS case in
this area was a 27yr old male. So treatment was alittle experimental
as you could say. I did make a full recovery or what the doctors
would call a full recovery. Which of course as many of you know is a
life of pains and aches and fatigue. I think growing up like this
was better for me then if I had this attack as an adult because they
were not limitations- it was just how I was! Doctors didnt know
about residual side effects so, the fatigue was “I was just a lazy
kid”…..the pains and aches in legs, feet and arms…(which were
not every day) were just “Growing pains”. So therefore we quit
asking the doctors about these things and just learn to live with
it. It wasnt until after the birth of my first child at the age of
21 that I did talk to doctor about the fatigue worsening to the
point that I would have to take a nap on my lunch break at work just
to finish the day and then again when I got home. I was told it was
probably “Post partum depression” and was put on Zoloft, which I
only took for a month, because it did nothing for me. My life just
continued with napping at lunch and or napping when I got home until
the birth of my 3 child which resaulted in an emergancy C-section
about 10 mnths ago. Since then the fatigue has worsened again and
the pains in my feet are every day all day long. The leg and arm
pains and aches are every day now. I am 35 now, so it has been 31
years since the attack, Could the surgery have had something to do
with the side effects worsening or just my age….could it be the
start of something else? I have scheduled an appointment with my GP which I have only seen once before, hope she has done her homework!!!

Thanks for listening and any help is a blessing, I feel like a lost
sheep that has finally found its flock.

Hi there and welcome! I had GBS a long time ago…25 years ago and I ma having trouble with residuals as well. They seem to be progressing as I age. But I can’t say why…age? Menopause? Illness? There are a few of us here with the same issues so I am glad you found us. We try to support each other through the days and it is good to know others have what you do. I have to head out to work here right away and I work out of town, but as soon as I get home and have a bit of time, I’ll share a bit more about my experiences and why I am here at the forums.

Janet

Two years ago at the symposium we learned about a studies results of GBSers
25 years and longer. 90% of the people had more pain, weakness and fatigue. No surprise, but learning that every year past 25 we lose 2% more nerve function each year.

I had GBS 27 years ago and am now 51yrs old. So far I think the study is right according to the way I feel. Not looking forward to more loss. By the time I’m 70, according to the study, I’ll be back in a wheel chair.