GBS-problems 30 years later

    • June 28, 2010 at 1:31 pm

      My name is Dana and I was diagnosed with GBS in 1981 at the age of 11. I had paralysis from the waist down and the left side of my face. I fully recovered, only left with occassional joint pain and tendanitis. I am now 39 and am having extreme pain in both of my legs along with shaking in both legs upon bending, squatting or rising. I have spent the last year attempting to get diagnosed to no avail. Some doctors feel this may possibly be related to the GBS and others say, no chance. I am curious if there are any other former GBS patients with the same issues. ?????

    • Anonymous
      June 28, 2010 at 2:12 pm

      Dear Dana.

      I too had GBS over 30 years ago and began to have problems about 7 years ago. You will find many other “old timers” on here who, like you, had GBS 20, 30 or more years ago and start to suffer from GBS symptoms again. I contacted Dr. Garreth Parry who has done numerous studies on GBS and he responded to my inquiry by saying that he has seen a post-polio like syndrome in people who have had GBS. He said it was a delayed progressive deterioration. I have found that most doctors don’t know much about it.


    • Anonymous
      June 28, 2010 at 4:42 pm

      Please check out GBS Adult forum. Have revived an old thread on this subject.

    • Anonymous
      June 28, 2010 at 6:01 pm

      Hi Dana,

      I have to second Susanne. I was pretty much fine until approx. 3 years ago and I’m almost 19 years post GBS. It started with the tingling and hot feet, though that’s calmed down a bit. My lower limbs also stay cold; this past weekend was very warm weekend, I’ve yet to have to turn on my A/c and still wear socks in the house.

      I never totally regained everything so squatting and rising were still difficult. However, I have had an increase of back and knee pain, thought that could be due to overdoing it trying to get rid of this excess weight.

      Have you tried any medication for the leg pain?

      Hope you find answers and feel better soon.

      Take care,


    • June 30, 2010 at 4:02 pm

      Thank you so much everyone…this is very interesting and I’m rather surprised to hear that I am not alone. I am scheduled to go to the Mayo Clinic in AZ on the 19th, as we are getting no where here in WA state. Yes, I have been prescribed everything! All the Fibromyalgia drugs and narcotics, to no avail.

      Most all of my testing have come back normal, including EMG and EEG, MRI’s, etc. The only thing that comes up are that my ACE levels are elevated. They first tested me in the summer of 2009 and my ACE levels were high, and just recently, they retested, and now they’re even higher. Has anyone had any experience with this? I think the only testing left, that I know of that could be done is a spinal tap and/or muscle biopsy. Not sure what the Mayo will think, but when scheduling the appt., they seemed very interested in my GBS history, which was surprising to me, as NONE of the doctors here have thought it to be related.

      So, anyone with any history or knowledge of ACE levels and GBS?

      Thanks to all who responded!

    • Anonymous
      July 2, 2010 at 3:10 pm

      I had a milder case of GBS in 1986 – could still walk but slowly. Trying to run would have put me flat on my face. Pain was with it…but tolerable. TWENTY years later….2006 I got it again… only this time it put me on the floor for 5 months…too weak to stand or even crawl over the side of the tub. But no pain – possibly because I was numb! I credit my recovery and lack of pain to my B-complex vitamins which are fantastic for the nerves. I also took mega doses of vitamin C to fight off the virus which might be responsible for it.

      Are you on any statins for cholesterol? They bring on many bad symptoms which people don’t realize is from the drug…pain in legs, shaking of hands and head, etc. They stop after one stops the drug but B vitamins are needed to recover from it.

      I wonder how our biological clock “knows” when it is 20 years?!? If you decide to help your body with supplements, let me know and I shall tell you how to find good ones and what to avoid. ( as in don’t buy tablets but buy capsules for better absorption, make sure they are balanced with at least 50 mg in most of them, don’t buy them with yeast, etc)

      Wholistically yours,

    • July 21, 2010 at 12:58 am

      Hello All…I’m currently in Arizona for my Mayo Clinic appts. Went today for my third EMG, which was just awful. Unfortunately, and thankfully, the results were normal. I see the Rheumatologist tomorrow. My initial appt. on Monday was with the consultive physician, who like all the other doctors, came to the conclusion (prior to any testing, mind you) that what I’m experiencing my be Fibromyalgia….soooo tired of hearing this, as I do not have the typical “trigger” points and areas that are usually common with Fibro. I am so very frustrated, as I know there is something more going on with me, but when most all tests come back normal, there is simply no where to go. They did do extensive blood work, which I should have the results for tomorrow or Thursday. I did mention the GBS and the post-polio syndrome, but no one seems to be interested in this. ?????? Does anyone know or have any suggestions as to how I can have the doctors take a closer look at my history with GBS? Is there any special testing associated with the similiarities to post-polio syndrome? Does it typically show up in blood work? Any advice would be so very appreciated. Thanks in advance for any advice!

    • Anonymous
      July 21, 2010 at 1:30 pm

      We are new to this foundation. What a great find! Why doesn’t the medical community at least refer patients to it if they don’t want to answer any of our questions? My wife is 15 years post GBS. Now having increasing pain, fatigue, decreasing strength, and endurance. Neuologist said it is not related to GBS. Apparently there is a trend here. Most of the studies we have read deal with relatively new GBS patients, perhaps 5 years out, but very little is said about the long term. Does anyone know about any longitudinal studies? Is anyone interested?

    • Anonymous
      July 22, 2010 at 3:15 pm

      It’s because the Doctors don’t know!!! Some don’t want to admit it. And they don’t know where to turn!


    • Anonymous
      July 23, 2010 at 2:37 am

      You took the words right out of my mouth ! Been 22 years with me and started having more weakness and pain 3 years ago. There is something with the 20 years and old stuff cropping up again.
      You are gonna learn more here than from any
      God bless,

    • July 23, 2010 at 3:17 pm

      Well, I wish you were right, but unfortunately not. I have completed all my testing and doctor visits at the Mayo clinic with no answers. After another EMG, I was told by the Neurologist and the Rheumatologist here that there is NO WAY my symptoms are related to GBS in any way, nor do I have Fibromyalgia or any other nerve or muscle issues. I am headed back to Seattle, with yet again, no answers. Because my ACE levels are elevated, the only thing associated with this is Sarcoidosis, but because my chest xrays look normal, I’ve been told that there is no need to dig any further into that.

      So, I walk like a 90 year old woman, my legs shake like a leaf on a tree, the pain in my legs is so excrusiating that it requires pain meds every 4 hours, but because my tests come back normal…guess what…I’m normal. Wow!

      The only thing I am walking away from here with is a prescription for Amitriptyline (Elavil), which, I’ve been told is for depression. Good thing because I am certainly depressed now. Another wow.

      By the way, yes, I have tried supplements and all the other homeopathic junk…nothing.

      So, I’m headed home with an empty wallet and a prescription for depression…yet another and final wow.

      Do not know where to go from here. I am more than sick of doctors and their by-the-book mentality. Ugh.

    • Anonymous
      July 23, 2010 at 3:48 pm


      The only thing I am walking away from here with is a prescription for Amitriptyline (Elavil), which, I’ve been told is for depression. Good thing because I am certainly depressed now. Another wow.

      Do not know where to go from here. I am more than sick of doctors and their by-the-book mentality. Ugh.[/QUOTE]

      Please hang in there!! Elavil worked well for me for depression and nerve pain when I was initially diagnosed with GBS. It may give you some of the relief you so desperately need.

      Take care and just hang on!!!

    • Anonymous
      July 23, 2010 at 5:54 pm

      Is it possible that you eat alot of carbs – sugars and starches. A former student of mine was diagnosed with fibromyalgia- went to 3 specialists and not one of them asked her what she was eating. I knew it was large amounts of sugary drinks and cupcakes. This did not show up on the bloodwork. So they put her on drugs that made her sick. She had to quit her job and is stilll suffering. BUT she would not give up her sweets for even a week…to try out my theory. And that is her choice. Potatoes and tomatoes also create pain.
      I recently tried an amino acid that has worked to take away anxiety/depression. I was at that point where I Had to do something. Living alone without family or friends and had to retire early because of the GBS did not help. NO matter what I did, I was hypersensitive. Finally realized that I was low in serotonin….because I ate mostly protein…..if you eat protein With a carb, that does not help….started taking this particular amino acid and it took the edge off…..immensely…..I am not going to mention it here, because you cannot just randomly take it….you cannot take it within so many hours of alcohol, with a bad liver, with other SSRI’s….because it is a natural SSRI…without the bad side effects…..BUT it works for fibromyalgia too according to the book
      You said that supplements didn’t work…..did you have someone who knew what they were talking about advising you? (Homeopathy didn’t work alot for me…only a few times…but supplements are the reason I survived GBS 2 times and not on pain medication)

    • Anonymous
      July 26, 2010 at 9:08 am

      The majority of doctors have little knowledge of GBS. As for delayed problems from GBS, there have been no actual studies done but as I stated in an earlier post, Doctors like Dr. Parry who see a lot of GBS patients, all report finding a post-polio type syndrome going on. Hopefully someone will study this. Many of us on this site could give them info.

    • Anonymous
      July 26, 2010 at 9:12 am

      One more thought for former GBS girl: Do you take any cholesterol lowering drugs? I know a lot of people who have gotten severe pain from these drugs and were misdiagnosed with fibromyalgia.

    • Anonymous
      July 27, 2010 at 4:48 pm

      Ha! My hands shake like a leaf all the time. It’s really funny going through airport security these days. They’re ready to draw weapons when they see me coming!

      Something to make a mental note of: many people suffer from B-12 deficiency as they get older. It’s a very complex absorption mechanism in the body.

      B-12 is vital for nerve function. Don’t assume a swallowing tablet will fix this. If you can’t get it normally (eating meat), you probably shouldn’t assume taking a tablet will help.

      One of the side diagnosis of my GBS diagnosis was discovering a long-standing B-12 deficiency. I was tested until we found that sublingual B-12 was adequately absorbed by my body.