July 6, 2012 at 3:58 am
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?April 27, 2012 at 4:37 am
Yes don’t want to be an alarmist but when you get caught up in the referall BS. If you have a serious problem,
go to the HR at a major hospital and they will likely figue it out. Don’t feel bad about it.April 6, 2012 at 3:14 am
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
-“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.April 1, 2012 at 3:53 am
doneApril 1, 2012 at 3:50 am
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.March 26, 2012 at 12:09 am
I read your story and please keep us up to date with how you are doing.
Very sorry to hear about your current condition but you’ve come to the right place. 18 months ago when I was DX’d I was looking for the same type of information. As the primary income for the family I can relate I was in the same boat just a short time ago. I would reaseach the groups referenced on this site to contact a liason in your area.
Every case is different but I would be more than happy to talk with you on my experience with GBS. Send me your # at kevinjunger1@gmail and I will reach out to you.
Hang in there friend and recognize you will get better.March 25, 2012 at 11:37 pm
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!
KevinFebruary 23, 2012 at 5:00 am
Hedley..Keep positive and hope you come back…
Years ago (pre GBS) someone with a terminal illness told to me in conversation “it is what it is” it stuck in my long term memory not sure why. Not to sound harsh but she’s dead and I am alive. I may be limping and kicking but I am alive. Better in some ways. I am 15 months…Much better…Back to ME..NO.
My point is it’s OK to say “it is what it is” but to say “Recover can take up to two years or more is also a popular quote. Most people come back under 1 year.” your right they don’t know! But improvement can take place no matter how many years it’s what you choose to believe. Accept where you are today but don’t acept it as the future.
(Keep the glass half full, refill as needed :).February 4, 2012 at 3:27 am
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.December 31, 2011 at 9:08 pm
There are many cases out there where people do return to work full-time. Don’t put the work in front of your recovery. Listen to your Doc’s..but question them at the end of the day you are going to be the best judge about when you feel you have the strength and endurance to return and in most cases the doctors will follow your lead.
Take careDecember 31, 2011 at 8:34 pm
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.
KevinDecember 22, 2011 at 9:39 pm
I think it is awesome you want to get off all meds.
Don’t get off course by the marijuana messages. What you are trying to do is a positve. The less synthetic stuff we put in our bodies the better off we are in my opinion. It helps us establish a baseline of where we are at. Marijuana is a valid alternative but if it’s not right for you for any reason that is Ok. Just health
Take care and good healing!
KevinDecember 15, 2011 at 10:33 pm
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!!December 6, 2011 at 10:32 pm
Keep us posted that is awesome news. This is the place to share so many people need to see that life goes on after GBS/CIDP.
CongratsDecember 1, 2011 at 8:36 pm
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.