I know it can be difficult but PLEASE seek another doctor if you can. In med-school doctors read a paragraph or two on GBS. Many have never met a patient with it. 1 in a 100 000 people means that 65 000 people on the planet have GBS right now. And if not, let this doctor know that the fatigue does not register on any tests such as EMG.
You have found a good place to vent, inquire, inspire and well…whatever, welcome.

best

Hello Carol welcome. This is a great place to help you heal. EVERYONE here that I have met is friendly. We all come from different walks of life but share in our pain and surprising pleasures.
I can offer no medical advice and am sorry that I can’t help your pain. I too want to sleep and never wake up at times. Even after a great day yesterday, I was quietly crying (I shouldn’t listen to Pink Floyd whenI’m sad!) My wonderful wife Lisa asked if I was OK and all i could answer was “I’m tred of hurting”.
The only relief I have found is to be blindly positive about recovery. All of us here have had to realize how important little things are and also to acknowledge important things we overlooked before getting sick, namely family, friends, and for many faith. At a minimum I strive to be cautiously optomistic and yes as mentioned I allow for times to be sad about my current state. We are all here to help. Please check your messages.

Best,
Chris

[QUOTE=istaroaz]When I was sick I lost 43 pounds, I had a severe case in Nov.2006. I have bounced back & gained that back & then a little more, but now I need to get my weight down about 10-15 pounds that would put me where I should be. Has anyone had similar experiences?[/QUOTE]

Hi istaroaz

I have battled weight gain all my life. I have concluded that the only diet is one based around my body and food needs. For me the biggest lesson was learning the difference between appetite and hunger. My North American notion of ‘all you can eat’ and food served on platters rather than plates had to go. Also, I identified that my ‘comfort foods’ are fattening so I carefully watch my consumption of these. I try to conciously balance my calories consumed with my calories burned.Following these principles I have been able to maintain my weight.
I appreciate the difficulty that GBS presents to followng my plan. I have been pumping the vitamin pills and taking it easy on the fattening foods. I have cut out most dairy and red meat/pork. So far, so good. I am being as active as I can and then I rest as much as i want/need. I notice that even simple excercise such as using my guitarist hand-strengthener while watching the boob-tube gets my heart rate up so I am hoping that my physio and return to life will be enough to burn calories.
I support you in your battle and hope you can find a solution that works for you. I hope that my and other suggestions here will help. Keep kicking a**!

The ‘War on Marijuana’ has created a monster that can only be stopped by decriminalization. I in no way advise or recommend anybody use and hope that if it is ever legalized that it is sold under rigorous regulation such as tobacco products with the appropriate warnings attached. However, it is obvious to me that steep penalties surrounding possession, cultivation and trafficking have driven this plant into the hands of desparate and often vicious hands. This makes it far more accessable for minors who understand that to buy booze they must find a willing adult to buy it (hassle)wheras to score pot they simply have to go to school. Every ‘major bust’ ignores the fact that there is usually an unnecessarily massive over-supply in the black market to absorb the loss of product. The waste from spending on enforcement and loss of potential tax revenue is staggering and decadent. Western countries that have decriminalized have far lower usage (e.g. Holland or Portugal reports 6-7 % use) than those where it is still a criminal act to posess this natural product (e.g. Canada and the U.S. report 14% use).