Yeah, I'll tell him. And I thank you for taking the time (with all that you are going through).

We need more research into this neuropathy thing.

I forgot to mention one thing that the physiatrist said to us:

We were sitting across from her and as we were about to leave, after finishing up she turns to us and says: "What I don't understand is why I'm seeing more and more people in Brooklyn, with this type of neuropathy, I just don't get it". No known cause, just the polyneuropathy'.

That's exactly what she said.

bye for now.
Melody

Hi, Melody.
I am new here just now. read your post.
Re:cidp, my first neuro said i had cidp and treated me for it w/IVIG and it made me sick as a dog, like the worst flue i have very had maybe worse. anyway she quit her practice to have a family so i go to another neuro and he said I don't think you have cidp because your reflexes are to good and you would not have reflexes in the ankles w/cidp. then he and another neuro said it was coming from my back, went to a bone surgon and he said no, so next neuro said i had diabetes, diabetes DR. and other dr.s said not so????
my reflexes and muscle strength is ok, but feet, legs, left arm and left side of face burn. so now looking into Small Fiber neuropathy, have you heard if this? they do acouple of test for this a skin test and a sweat test. well enough for now. will check back. good luck.

--remember, we talked about this before; "classic" CIDP generally comes with far more motor symptomology than Alan has ever had, yet there are sensory variants that have minimal or no motor symptoms.

As Dahlek notes, there are numerous autoimmune mediated neuropathies; many of these are purely or primarily sensory, and can be caused by a number of different mechanisms. The research neurologists, such as Latov and company, suspect that a good number of sensory axonal neuropathies that are currently labelled "idiopahtic" probably have autoimmune genesis; the autoantibodies that medite them just haven't been discovered yet. (The ones that we do know about have only been identified over the last 20-25 years or so. The research is slow and painstaking.)

But--in thinking back over the tests you said Alan had (not all of which I remember, and I don't have the leisure to check back all your old posts now); did he ever get titred up for anti-sulfatide antibodies?

Check this out:

http://www.neuro.wustl.edu/neuromusc...html#sulfatide

There are also a few antibodies to nerve gangliosides that can cause similar symptoms that you can read about in the same section (that are very rare)>

The other thing that came to my memory is that you had said Alan at one point had a positive anti-nuclear antibody titer (ANA)--that leads to suspicion of some sort of vasculitic autoimmunity.

Both of these can cause primarily sensory neuropathic symptoms in the extremities. The spinal fluid protein will tend to make neuros think CIDP or its variants, but there may be other immune processes going on that wouldn't fall neatly into that category (and in this realm, the categories are still quite fluid, anyway--we really don't know all that much about autoimmunity, and whether, as the people on the gluten boards who talk about zonulin and tight junction dysfunction assert, all autoimmune processes start from a leaky gut letting pathogens pass through that the body overreacts to. Now THAT'S a nice read if you want to pursue it.)

Hi Glenn:

I'm so tired of all this ANA, titres, anti-body, whatever. Alan (thank God for Zoloft), just left to go on a second job interview. Imagine!!! He got IVIG on Monday and Tuesday, went on a job interview on Wednesday, went to two doctor appointments on Thurday (and was told he might not have CIDP), and this morning, got up and went on a second interview (to the same place he went on Wednesday). And all during this, we talk about our son, who is completely lost to us because he is sitting in an apartment in California and goes on the computer 24 hours a day (because he has aspergers).

This would ruin anyone else. This would take the family dynamics and kick it in the butt. I have to give Alan a lot of credit. Maybe it's the zoloft, maybe it's the fact that I take such good care of him. I don't know.

He's a lot better off than many people on the boards because he can go to the gym and work out. It makes him feel better and after speaking to the physiatrist, now we know WHY.

Oh, this is important, at least it works in Alan's case. Before he goes to bed at night, when he takes the Alprazolam, he puts Blue Stuff on his feet. He coats all the toes with it. In five minutes, he's snoring away. So at least he does manage to get a good night's sleep. He could never do this 5 years ago. He was on the fentanyl. Only going to Dr. Theirl, getting the G5 machine, and my massages, etc. allowed him to go off all pain meds. Like I said, the physiatrist believes that doing this, will get him better. Because we may never know why he has this polyneuropathy going on, at least it's manageable. Oh, she also said AND THIS IS MOST INTERESTING!!!

"I have many diabetics coming in and they have polyneuropathy, and everybody else assumed because they were diabetics that they had to have DIABETIC NEUROPATHY.

She said "We are finding more and more of them have Idiopathic Polyneuropathy, and it's NOT diabetic neuropathy". Now how interesting is that conclusion!!!!

I guess we shall continue to do what we do and I'll support him the best I can.

I mean, what else is there, right?

Melody

Hi Melody, If you get a chance next time you see her ask if the people who she is seeing with idiopathic pn were at or near the world trade center and if she has ever asked them. It seems like an obvious question but you would be surprised at how often the link is overlooked even with respiratory problems.

HEYJOE!!!

That's an excellent idea. I am writing myself a note to that effect. The next time we see ANY OF OUR DOCTORS (they all know about Alan's PN), I'll ask the question.

I know that many of the people have suffered Respiratory problems. but god only knows what other problems they got from that exposure.

My girlfriend's son (only 25) was on the roof, it was his first week on the job. I'll never forget that night as long as I live.

So I shall ask about being around the World Trade Center. You know, no one ever mentions PN in relation to being exposed to stuff at the World Trade Center. Wouldn't it be amazing if, when I ask the physiatrist "How many people that you have diagnosed with Idiopathic PN, well how many were at the World Trade Center on 911???". She would have to go and contact them all and ask questions to see if there is indeed a pattern.

Want to know what I think. There is always a CAUSE for anything. We just haven't found it yet. I don't care if it's inherited, genetic, Exposure, WHATEVER!!! Something is causing people to get tihs polyneuropathy.

And when I told her that the first question Alan was asked 18 years ago when he first had the symptoms of neuropathy and we went to the doctor and the doctor blurted out "Have you ever had sex with a vietnamese woman"? Well, you should have seen the expression on her face yesterday. She said "why on earth did he ask Alan that". When I said "Vietnamese prostitutes....think about it......! and she said "Oh I get it, syphilis, yeah, long term syphilis results in neuropathy......

Alan told her 'I was tested, so don't worry". Negative.

Amazing.

mel