I still freedom on my bike, but walk like a fragile old man.
You guys are so inspirational. I overdid it the other day and completely backed off. I don't know how to pace myself to regain my strength.
I go around the block twice. I can’t three can feel in my legs. I feel a lot better in the pool. Bike going on a trainer tomorrow 
Walking is the worst! That's why I ride. Way better/less pain for my feet.
When I get hot, it makes everything worse. Does anyone experience that during a workout?
I have had the same problem with Drs. that dont understand GBS. Maybe you can contact your local/state liasson at this website… http://www.gbs-cidp.org/home/get-support/chapters/ The liasson may have some suggestions for good drs in your area. If you have a PPO insurance plan and can make an appointment anywhere, I would try to find a good neurologist that can get u started on IVIG or on Plasmapheresis right away. They are extremely expensive treatments, … hope your insurance will help.
Kath
When I get hot the hands get swollen. At night iam sleeping with gloves on. I like the air on in the room, so the cold really bothers the hands
My hands swell up and really hurt if hot, they get real stiff. I wear gloves at night because I like the room cold, the cold really hurts the hands
Just to file my nails feels like iam ripping them open
Absolutely! It's like my energy level is inversely proportional to the temperature, and it's an algorithmic function. In other words, the hotter it gets, the faster my energy level declines. And when it gets to the mid-90s and above, forget it. I got caught out several miles from home when it got into the upper 90s one time, and I thought I was going to have to call someone to come and get me. Fortunately, I was able to rest in shady spots until I got home, but it taught me a lesson -- watch the weather forecast, and don't get ambitious if it looks like it's going to be hot. 'Nuff said!
They didnt do IVIG in the hospital? The gbs-cidp foundation international has a list of liassons in each state. Maybe they can recommend some good Drs. that may work with you.
When I had GBS - I was also going through a very stressful time in my life. I had a divorce about 3 years earlier, and this was a very difficult time in my life. So, I kind of think that had something to do with it - my immune system may have been down. However, I did have a cold - and I did have surgical tooth work done. I understand the cold and surgery are 2 of the triggers. That was 25 years ago. I do not think I have anything from the GBS - however, at my age I just attribute it to old age since I am 68. My legs are a bit weak when I want to climb on something. I do not find I have any trouble when I walk fast for exercise. Best wishes to you - I "believe" I read there is a 5% chance of it occuring again - so concentrate on the 95% you have going for you. I am so glad you were firm with the ER about your condition. Nebretta
Hi Tally,
My son went through the same thing. We were sent home from the ER three times before they finally did a spinal tap, and even then they said it looked like meningitis . . . he was on life support before they figured out it was GBS. Kudos to you for insisting they follow up. You are going to have to keep advocating for yourself in order to make sure you get proper treatment. GBS is so incredibly rare that most doctors have only read about it, not seen it or actually treated someone with it. I got so tired of the doctors who said "the books say" or "research says" but had never treated someone themselves. And even among doctors who have the experience, they may disagree on the best manner of treating it. Some use IVIG and others use something called plasmapharesis, a process which kind of filters your blood.
The good news is that you seem to be far enough from onset that it will probably not become life threatening. But the bad news is that this is probably going to affect you in ways you do not even realize for years to come. It is really important that you find a neurologist who has actual experience with GBS. I am not sure where you are, but I have found that university or teaching hospitals with really large neurology departments are most likely to have the doctors familiar with GBS. Start calling them and checking them out on the internet. Do not waste your time and money going to see them until you confirm with them that they have actually treated patients (the more the better) with GBS.
Hang in there! Your tenacity is going to help you a lot.
Thank you. My brother in laws, dad was a doctor and said in 35 yrs he only heard of two cases. I think the hardest part of this is finding a doctor that knows what to do. Iam taking a break from them to frustered by them right now. It’s horrible that the doctor wants to say I have arthritis and then saying I have stage three kidney disease but not doing anything. Stop trying to trat me for something I don’t have
Exactly! Stay strong!
Tally said:
Thank you. My brother in laws, dad was a doctor and said in 35 yrs he only heard of two cases. I think the hardest part of this is finding a doctor that knows what to do. Iam taking a break from them to frustered by them right now. It's horrible that the doctor wants to say I have arthritis and then saying I have stage three kidney disease but not doing anything. Stop trying to trat me for something I don't have