GBS-problems 30 years later

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.

Susanne

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

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,

Tina

Dana,
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,
Carolyn

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?

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

smitty

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
Dr.
God bless,
Drummer

[QUOTE=FormerGBSgirl30yearslater]

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!!!

Dana,
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)

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.

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.

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.