My Husband Has Never Fully Recovered from GBS and No Help From Doctors

[teesa25]

My husband got Guillian-Barre after having a respitory cold/bad strep throat in 2003.   As the GBS progressed, it got all the way up to his lungs and stopped just short of him having to have a breathing machine.  Gradually as they treated him the GBS seemed to subside and he recovered his mobility.  However, his treatment was cut short after only a week when the insurance said they would not pay any more.  He never received the therapy that is standard I have heard after such cases.  
Shortly after we were married in 2005, my husband began to have lots of immune problems.  He was sick frequently and normal work days exhausted him.  He would come home on his days off and sleep days at a time.  We went to several doctors, from the ER when the symptoms were bad to trying different primary care physicians and others.
No one could tell us what was going on, despite his repeat bouts of strep throat and one of walking pnemonia.  
In 2006 he began to have severe joint, back, and muscle pains, as well as digestive issues.  This has progressed to today where his pain is that of an old man with arthrtis.  We tried going to a rhematologist who said he might have osteoarthritis but did not disable him or do anything, just said to take this drug and that drug.  
We think that the GBS caused lasting damage to his nervous and immune system,   He says it feels like his body is shutting down, and as I watch him he moves just like a 75 year old man.  Yet after many tries and many many doctors, none address the GBS, autoimmune/neruological issues.  If he goes in for the pain, they glance at the paperwork and give him some ibuprofin.  They just don't seem to believe us because of his age, and also blame his weight, although since the symptoms began he has lost a lot of weight with no improvement in his pain level.  Sometimes he can't move his fingers, he tears muscle very easily, and has constant diarrhea (which a gastro spec found no cause for).

[teesa25]

Thank you for the reply and I am carefully turning over what you said.  It makes sense that the medicine given to him when he had GBS has aftereffects, if I understood you correctly.  Can I clarify, you are agreeing that due to the side effects, it affected his nervous system?  

Commenting on the physiotherapist, my husband actually saw one just recently after an injury at work.  He was on the program of therapy for two months and it actually made his muscles react adversely, causing more and intense pain when it should have begun to get better, and this was confirmed by the therapist that the therapy was causing more pain then doing good.

So, I am not sure where to go from there.  We were really thinking that the auto immune issues damaged his nervous system, which is slowly attacking and destroying itself, perhaps like fibromyalgia?, and were wondering if a neurologist would be able to analyze his symptoms the best.   What would be the best resource, the best doctor, for us to go to to find someone who would acknowledge that something is going on and help us to deal with the symptoms?  We would need to find the best approach possible, because up to this point, it has been impossible to find a doctor who will see the big picture, that this is a chronic condition that is affecting his whole body.

thank you

[Abhijeet Ghosh]

Dear Teesa,
BBS is a type of auto-immune disease and i am happy to hear that he had a good recovery.
The bad part, what i understood is that, his quality if life is going down day by day due to the disease's side-effect.That sometimes happens due to the side-effects of the medicines takes as their prime action is to have a direct action on the immune system where the auto-antibodies are working (against the normal system).
I would suggest you to have an appointment with a good Rehabilitation Expert as a the arthritis doesn't have any ill-effect on the body musculature (his muscle strength remain intact).
Why the doctor's address the pain part only is that presently there is not much option available with them as the disease has healed off completely.
Only the pain part treatment would be related to palliative treatment only.

Hence meet a good physiotherapist to -
1) Work up on the involved muscles.
2) To prevent the joint stiffness.
3) To cut down the weight.

I hope you understood my point.
If any clarification is required, please post me further.
Regards