Well, today was a most interesting day. My husband went to the neurologist. I again referred to his mom having GBS and the neuro said "it's not related". I just looked at her and said "I beg your pardon, but you said my husband has CIDP and that is most definitely related to GBS. and she said :

"well, we're not really sure what your husband has, he had protein in his spinal fluid and that means auto-immune, so we are thinking along the lines o CIDP, but it might be a variant of it. That's why I wanted him to try the IVIG. We are going to give this a few more rounds" ???????? She also examined him, did the neurological thing, made him walk on his soles, his heels (he coudn't). He couldn't kneel on the floor either.

She's very thorough but I left with more questions than when we walked in.

more talk, more talk and then she says:

I want Alan to see a physiatrist. Now I have never heard of such a thing in my life. Have any of you??

So we go to the second floor of Methodist Hospital to make an appointment. She had an opening TODAY. So we went at 3 p.m.

I learned more today from that physiatrist than I ever learned in 18 years looking for a cause to Alan's neuropathy. She tested him this way, that way, made him walk on the balls of his feet, on the heels (he can't balance and I never knew that). She tested his sensory stuff.

She came to the conclusion that his problems have absolutely nothing to do with his back.

He told her "yesterday, I saw Dr. Theirl and he used a G5 machine on me and when he does that, I am in heaven, all the pain in my feet went away".

Now this is exactly what she said to my husband: "Maybe you think you felt better???" I looked at her and said "Are you one of those doctors who think his pain is all in his mind?? and she laughed and said "absoluely not, but I can tell you the his problem has nothing to do with his back."

She did the reflex test and she explained that his reflexes were perfectly normal and IF IT HAD ANYTHING TO DO WITH HIS BACK, HIS LEG WOULD HAVE JUMPED STRAIGHT UP WHEN SHE HIT HIS KNEE WITH THE HAMMER THING. So to her, and according to the exam she gave him, and more important, she had the results of his MRI in front of her and she said to Alan:
"Alan, nothing here says Herniation. If it did, I wouild say you had a shot with the back thing, but all you have is bulging discs and they don't impinge on nerves so it's ot your back".

She then said "you might never really know why you got this or how you got this. We only know what you have, not HOW YOU GOT IT!!!

She said he has Sensory polyneuropathy and I said "we know this but why, is it because his mom had Guillan Barre Syndrome?" and she goes "how do you know for a fact that his mom had this?". and I had to admit that his sister even questioned that diagnosis over 40 years ago. Alan's sister said they were not sure exactly what the mom had (even though they were told it was Guillian Barre).

Th physiatrist said: "I believe in Eastern Medicine, in Acupuncture, etc. (She's a medical doctor by the way). She had acupuncture done on her back. Alan told her that he did the acupuncture thing years ago but stopped after 6 months. She said "but you got better because you just told me you used to be on the fentanyl pain patch and you no longer use it". Then she said "the best thing for you is to exercise". Alan said "I don't understand any of this".

That's when I opened my mouth and said "Alan, what she is saying is that you should continue to go to the gym, exercise your calf muscles, they'll support the nerves in your lower extremeties and this will prevent you from getting a drop foot and being in a wheelchair in 10 years". As soon as I said this, she jumps up and says "THAT'S IT EXACTLY""". She said "I didn't want to put it into those words but that's exactly right. Exercise, getting the muscles strong in your legs, well, that's the best thing you can do in my opinion. It really doesn't matter why you have this, the treatment is the same. The IVIG might work, (I don't think she thinks it will), but we're giving it a shot. But the exercise and weight loss is the reason you are walking, and doing better than you were 4 years ago"

So we are back to square one. They are not sure if he has CIDP, a variant of it, or whatever it is THAT HE DOES HAVE!!!

She did say "I'd be very interested to know if any of his relatives have ever used a brace?" I wonder why she wants to know this????

We don't know but believe me we are going to find out!!!! I'm going to call his sister and ask about his relatives. He has never met over 100 cousins and they all live in Chicago. His mother came from Chicago and moved to Brooklyn. His sister never mentions that part of the family

And the plot thickens!!!! Will update!!!

melody