The name is Pete...53 years old...from Little Rock, Arkansas, USA,
So...on February 4, 2014, I went to my primary care Dr. for a physical. Was feeling GREAT! I simply went to see him as a precaution. Blood-work and everything else came back "perfect" for a man my age. And then....he gave me a flu shot.
My first symptoms appeared on March 8th...slight tingle in the fingertips and toes. A week later, I couldn't feel my feet...so, I went back to the Dr. to find out what was going on. He thought it was nerve compression in my spine..."Let's watch it and see what happens." A week or so later I could barely stand up...so, I went to the hospital, instead. I was admitted immediately (March 31, 2014), and the neurologist who saw me diagnosed GB within minutes. I had a relatively mild case, as it had only progressed to up my mid-thigh...in addition to my hands.
I was in hospital for 2 weeks...had the nerve conduction, spinal puncture, and MRI to confirm the diagnosis. Then, received 5 rounds of plasma-pherisis, every other day, At the end of two weeks, I was walking with a cane...and feeling like I was making a miracle recovery!
That only lasted about three weeks. I'd gone back to work..and was taking on a full schedule. But then, the numbness and weakness returned...and, I went back to the hospital for 2 days...emerging with a referral for 6 rounds of out-patient IVIG. Again, after that (mid-May 2014)....everything progressed very nicely. It seemed like a slow recovery was beginning to take place. I was walking again, without a cane, and back to work, as usual.
But, just recently...in mid-July...my symptoms seem to be flaring-up again. I can hardly feel my feet and legs from the knee down...but, for NOW...I can still walk. I have NO IDEA what my next move is!
I'm not taking any medication...except for .5 gram of Xanex for anxiety. This scary stuff!!
The name is Pete...53 years old...from Little Rock, Arkansas, USA,
Welcome, Pete, I fly to Little Rock once a year to take my son to see his doctor -- UAMs is a terrific hospital. Welcome to the group.
Your experience sounds a little like mine. I went in October 2013 for a flu shot. By Nov 2013, I was already experiencing symptoms of gbs. I went to 2 doctors and an er through December 2013. They each gave me medicines to try to help me and pain medicine. In Jan 2014, I went back to my primary care physician who knew immediately that he was not qualified to give me an accurate diagnosis. He set me up the very next day with a neurologist who told my husband to take me immediately to the hospital and have the er doc call him for instructions. I spent 9 days in the hospital and took the 5 recommended doses of ivig. I came home in Jan 2014 and was on a walker until mid way through Feb 2014. Since then I am able to walk on my own but with chronic ataxia (off balance...walk like a duck). I now walk with a four pronged cane 1/4 mile in the am and 1/4 mile in the pm. I am still numb in hands, feet, legs and arms. I still cannot drive or work. My doc thinks that I have stalled in my progress and he thinks I need maintenance ivig every 4-6 weeks to progress. I have no insurance so that is not an option. I have applied to social security disability (have a lawyer now) and have been denied twice. I am a 54 year old woman. My next step is to appear in front of an administrative judge.
I also have another attorney who has filed a case with the federal government under their vaccination program. It is amazing to me that there is such a big coincidence between getting the flu shot and having symptoms of gbs within 2 weeks of a vaccination. I filled out a form at www.vaers.gov letting the government know that I got gbs from my vaccination. My attorneys have won many cases in court for patients who were healthy prior to their vaccinations and now have gbs. We are the collateral damage from these shots. Let's just say that the shots benefit 95% of people and the other 5% are collateral damage. There is a fee charged for every vaccination that is given. That fee goes into a large pot of money that the federal government pays out to those who suffer the collateral damage. Go to my lawyers website at www.mctlawyers.com and look at the pages and pages of folks that have been affected. There was a young 20 year woman who worked in a hospital in PA who was required to get a flu shot. She just won 41.6 million because after 2 years she stll cannot walk and will need care for the rest of her life. I was very healthy prior to my shot. I could walk 2 miles in 20 minutes and had not even had a cold or been ill for 8 years. Now I walk with a cane and can walk 1/4 mile in 17 minutes. I am determined to beat this thing but wish our government was more forthcoming in letting us know verbally prior to each shot that this was even a possibility. Good luck to you in your progress. Don't give up...get mad!!! I also take only one medication...gbs caused me to develop high blood pressure for the first time in my life.
PS I have met military vets as well who claim their gbs was also the result of their required vaccinations. And some of them have even gotten ms as a result of other vaccinations. Coincidence, I think not!!
That sounds horrid Pete, so sorry! Did the doctors confirm that the GBS is returning, maybe it hasn't gone away yet? Keep up the fight and I hope you can go on a nice long bike ride soon! I was just diagnosed with GBS July 17, my hands and arms got hit first and that weakness is my residual symptom now. I've got a bit of healing ahead of me yet too!
So sorry for your long struggle! Perhaps you have CIDP which would require different treatment, I believe. Check with your neurologist.
HI Pete, sorry to hear about your GBS. Sounds like you may have variant form of GBS called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Here's a website that offer more information on CIPD.
Hope this helps. God Bless and Stay strong!!
I'm REALLY, REALLY hoping this is not CIDP. My neurologist, who is a seasoned veteran physician, assured me that GBS does NOT "come back." He said, "It MAY flare-up occasionally, and mimic some of your original symptoms...but, it should NEVER reach the severity of your initial onset."
The Dr. also warned me that the hot, humid summers of Arkansas would not help me much. He said, "Your nerves much prefer the cool, dry air...so, don't "freak out" if you have a flare-up during a heat wave -- it's not entirely uncommon."
Finally, he told me -- realistically -- it would probably be AT LEAST a year (March 2015) before I start feeling like "myself" again. He said, "This is a malady that requires patience and a positive mental outlook. Your biggest obstacle to recovery could be YOURSELF -- pushing too hard to return to normal activity. You MUST give it time..and, rest."
Working from home today...feeling DEEP sympathy for those whose cases are FAR worse than mine. The disability in my feet and legs, ALONE, is enough to drive me NUTS!!! This forum is a god-send for my mental state!
I'm not a dr, but I was diagnosed in OCT 2013, and I was in the hospital for months. Recovery was actually the hardest part after I got out. I had a horrific couple of months that made me nearly suicidal the pain was so bad. BUT, I made it. I never ever thought I was a "tough" person but I guess I am now :) I can't speak for your recovery, but for mine, it went in waves. There are good days/bad days, good months/bad months. The progress comes, it's just gradual and not as fast as you want it to be. A source close to me has a daughter that is 20 years old and is on a ventilator in a special ICU hospital here in my state. They aren't sure if she is going to live or not and she is currently being reported/studied as one of the worst cases on record. With that being said, I feel grateful that I can even "wobble" around again. I never thought I would be able to walk again as severe as my condition was. Don't lose hope. Recovery will come and there are "waves" in which it happens. I still have them. Some months are better than others. Sometimes I fall getting out of bed in the morning. Sometimes I'm just in pain, stiff, and wobbling. Recovery comes slowly, but in waves. Don't get discouraged being good one day and bad the next. It will all even out. Wishing you the best.
All my love,
Thank you, Jessica! That is precisely the kind of encouragement I needed this morning! Like you said, every case seems to be a little different. But, knowing that someone else's recovery experience has been SO MUCH like mine...and, that there REALLY IS light at the end of this tunnel...is invaluable.
Even last night, I had a very difficult time sleeping...tossing and turning...imagining EVERY horrible outcome my mind could invent.
Thank you, AGAIN!! That was wonderful to read!!
BTW: Has anyone else found that soaking your feet and hands in icy, cold water seems to bring some temporary relief from the tingling-vibrating-numbness?? I'm doing this constantly...and, it's been effective for me!!