Liza Jane:

The last time we went to see Dr. Goldfarb, after examining Alan, she said "the next thing for you to do is get a lumbar puncture, that will tell me a lot of things. There might be auto-immune things (can't remember exactly what she said), but she did say the word anti-bodies.

Now here's what Glentaj said when I asked him what do they look for in a spinal tap.

"Generally, what docs look for are signs of autoimmune disease, so such as protein banding that might represent a breakdown of myelin. They will also look for excess blood cells in the fluid, or any signs of infection. Normal spinal fluid is crystal clear, cloudy fluid is suspicious. (They found absolutely nothing amiss in mine, so even a normal results doesn't necessarily rule out problems.)"

AND NOW FOR THE BIG NEWS. HE'S NOT HAVING IT ON MONDAY,
The nurse just called me up and asked me why he wasn't there today for pre-testing? I said "what are you talking about?, no one told us to bring him in for any pre-testing". She said "before we give anybody a spinal tap we need blood work". So I said "well, he just had lots of blood work done, I'll be happy to fax them to you, so I did and she just called me up and said "no, we need different blood work". Then she mentioned CBC and a whole other mess of stuff that I never heard of.

So he goes Monday for pre-testing and TUESDAY at 9 a.m. for the spinal tap.
I told him he doesn't have to do this but he wants to get AS MANY ANSWERS TO WHAT IS WRONG WITH HIM AS HE CAN!!

Don't forget, his mother had Guilliam Barre Syndrome, there's lots of stuff on his side of the gene pool that, well, it needs looking into. ANd the spinal tap guy said "we can find out LOADS of stuff from spinal fluid".

Also, (and I have a hunch that this might have something to do with SOMETHING but 24 years ago Alan came down with a fever and they hospitalized him for almost 7 days. They had him in isolation and even I could not visit him. They had no clue. They put in his charts, FEVER OF UNKNOWN ORIGIN. They said "oh you might have had hepatitis, or mono, but we can't be sure".

So maybe they'll find some antibody to something in his spinal fluid. Alan said to me "Listen, we've been trying to find out answers for over 18 years. No one has given a crap about finding out why I have PN. Now I find this DR. Goldfarb who has ordered more tests than any of my other doctors put together. And I trust Dr. Fred, so if Dr. Fred agrees with Dr. Goldfarb, I'm getting this done".

So what can I do? I can't talk him out of getting a spinal tap. And this spinal tap guy is a neuro-radiologist who Dr. Goldfarb recommends.

So I guess we have to do what we have to do.

Even if we rule lots of stuff out, we might find Alan has something that can be treatable. At least I hope so.

My opinion is this PN has absolutely nothing to do with insulin resistance or diabetes or anything like that. I think he has autoimmune problems and/or stenosis in the back. IF the spinal tap comes back and all is clear, the next step (at least this is what Dr. Goldfar said "is to find you a good back specialist". Since the last back specialist wouldn't touch Alan's back and said "I can't do anything for your stenonis (and I told Dr. Goldfarb this), well, she said "don't worry, I know a good back guy".

So I believe she is just ruling out everything that can be ruled out.

Alan does have psoriasis and hundreds of little cherry angiomas all over his body. Always had them. Not that this means anything, just wanted to mention this.

Melody