I have cramps/tightness in my calves just about every morning, and also in my toes. It seems to go away pretty quickly and I am not taking any meds for it. I am 18 months post and would say about 85% just curious as well if there are any explainations?

You are doing good work and there is value. Don’t stop!

From the “Experts”

-Affects 1-2 per 100% (100% margin of error)
-Recovery lasts 6-12 months….but as long as three years (vague)
-your at greater risk if you are ” a young adult or older adult”-Mayo Clinnic (completely useless)
-70% full recovery (no definition)
-Poor prognostic factors over 40,preceding Diarrheal illness,vent support, poor upper limb strength

Physical Therapy:

-“Thats a 2
-“That a 3,4 or 5”
-“how would you rate your pain”…..completely subjective

I don’t want to be negative about the medical profession because most of the folks who are dialed in to GBS are very knowlegable. But I have to say there is a lot of crap out there if the best you can give me is…”affects young adults and older adults”

I’ll validate yourn survey if it help you or anyone else get more facts. It’s not a waste of time an I applaund your for your efforts.

Good healing my friend.

I am not one to go to the ER for minor issues nor do I know your issuracne situation. At the same time you’ve already been dx’d with a major condition. If you feel something is not right or getting worse…get yourself into the ER at a major hospital. They WILL see you. It’s important for your local doctors “to keep a schedule” but they have NO idea what you have been through and are just filling in blocks on a calendar. If you feel this is not fast enough don’t sit back and wait. If you have insurance my recommendation would be to go to the ER and make sure they answer all your questions.

Kitze20,

You are going to find great support and advise on this site. Your case sounds alot like mine in that there was a long period between symtoms and Diagnosis. I am about 18 months in and was officially diagonosed 3 weeeks after 1st symtoms appeared at which time i rcieved IVIG. Not entirely sure how effective it was. Like you my case is considered “mild”. Keep focused on the fact that you will get bettter. Like you I never lost the ability to walk but for long distance I was being pushed in a wheelchair just 12 months ago. Water classes, weightlifing and just getting out and walking outside on an indoor track were the things that seemed to help me the most. Alot is said about resting and I agree in the early stages in is crucial not to over exert yourself. At the same time to rebuild lost muscle mass takes nutrition and work (exercise).

As many will tell you it is a long and slow road but you will get better.

Take care and we are thinking of you!

Kevin

nkolb,
Your are correct GBS is relatviely rare and in local hostpital the may very seldom if ever see a case . If the symtoms fit you should get to a major medical center. I spent 2 weeks getting local referals and felt I was getting run around in circles….still getting worse. At that point I went to a major hospital and was DX’d in 12 hrs and the treatment started that night.

So awesome to here that you are out there living life. I am 14 months post GBS and it has been a long road but like you I can do most everything I could do before. Weak ankles (dorsiflexion) and hand are my biggest issues right now. Ability to run fast or for any distance is still an issue (not that I ever really desired to do it before). I’ve stopped PT and anything I do now is on my own, lifting weights, walking, stretching all that good stuff. Not where I want to be but it gives me something to work towards, and I do believe that the harder you work the better your recovery. Good luck to you and everyone in 2012.

Kevin

I think you guys are on to something.

Cost effective treatment with reduced risk of dependency. So many people have run into problems with benzodiazepine’s and sythetic optiates. You don’t see this kind of dependency with Marijuanna. If you are talking medium to long term use Marijuana is a much better option. I can’t speak for eating it, but if you burn one and it works for you. Fire up!!

Always try to make sure you are getting 8 hrs of sleep per night. This condition will make you feel like you don’t want to get up and do anything. Try and push through it. The more you try and do now will lead to improvements in the future.

Take care