[MelodyL]

Well today was the end of the journey (as far as doctors go, I mean)

Alan had thought that the tingling between certain toes of each foot was an indication of nerve compression, then we both went on the internet and saw a procedure performed by a surgeon where he UNCOMPRESSED the strangled nerves. We contacted Alan's orthopedic surgeon, asked questions and Alan was referred to another neurologist.

Today was tha appointment. We were in his office from 3:30 to 7 p.m. That's how thorough he was.

At first a technician performed a nerve conduction study which was nothing that I have ever seen before. He made Alan grit his teeth, hold his arms up, and clasp his hands together and try and pull them apart. Doing this for one second intervals. Never saw this before.

A very thorough test.

Or so I thought. The neurologist walks in (he was going to do the EMG). He looks at the screen and does not like the way the nerve conduction test was performed SO HE DID HIS OWN. That's right, same procedure, same griting of the teeth, holding hands together.

Then he did an EMG. Then he did a complete neuro exam. I don't think Alan has had this kind of exam (well I don't believe he ever had had it).

The guy was THOROUGH!!

And he asked LOTS OF QUESTIONS about Alan's family background, his sister, our son, ALL KINDS OF QUESTIONS.

So at the end of it all, I really hoped the guy would turn to us and say

AHA!!! I know why Alan has neuropathy.

He did not say this.

He did say .....

"Alan does not have CIDP"

So I said "so ,are we back to Idiopathic once again?" and he nodded sadly.

I said "But there IS a cause, right?, but we don't know it, right"

And he said 'Exactly".

That's when I said the following:

"Okay, you don't know WHY he has this, but can't you do something about the pain, the tingling between the toes?" We had gone over that Alan had formerly used the fentanyl pain patch, the other stuff, and that it all made him ill, and I asked him the following (I've also asked this of other doctors but now at least I know why they all said "no, we can't do that".

I asked "Can't you just take an injection of lidocaine, or botox, OR WHATEVER can be used to numb the nerves that are causing the tingling?"

He just shook his head and said "no, it won't work". And I said "why not?" and he said something to the effect of that Alan's feet, well the nerves in his feet have died, or they are so badly damaged, that, well PAIN IS A GOOD THING, it's a sign that some of them have not died.

I said "I know that you think pain is a good thing, but to Alan, PAIN IS NOT A GOOD THING, isn't there an injection that will numb the nerves?"

He said that no, that in Alan's case, the nerves are so damaged, that the signals are misfiring (I really did try to remember everything the guy said but we are talking over 3 hours here and I want to get the facts correct.

He also said that there is no operation, no surgery, there are no compressed nerves in his feet, that he has very very bad peripheral neuropathy, that he's surprised that he walked as well as he could, that he should continue to walk, that it's good for him (even if he does have an ulcer), his ulcer was debrided last week and it looks good.

He looked at it and asked why they could not operate on the reason that Alan has the foot ulcer and I explained that the doctors don't like to operate on feet with as bad neuropathy as Alan and he nodded and said "right, because infection can lead to amputation.

So I again said "So what do you have for pain"? and he said "Well, Alan doesn't like the pain meds that are available", and I said "no, the pain meds don't like Alan". He shook his head sadly.

So this had to be the most thorough exam, and oh, I forgot. The doctor said

"Since Alan does not have CIDP, he should not be getting IVIG".

Alan is getting an infusion this Saturday. It will probably be his last I have no idea. I asked the doctor "Don't you have to be weaned off this stuff?" and the doctor said "No, nothing will happen".

Is there any truth to this.

Alan is doing it every 2 months now, and he said he has 2 more treatments to go. Can he just stop this infusion thing?

Anyway, I did try to remember everything that happened.

We came home, I made him a nice dinner and told him. "We are not done, you just continue to take as best care of yourself that you can, and I'll do the nutrition part of all of this". He laughed.

So that's all!!!!

Hope all are well.

Melody