Okay,for those of you who don't know what Alan has ultimately been diagnosed with (in order to be eligible for IVIG), his diagnosis is CIDP or Chronic Inflammatory Demylinating Polyneuropathy.

Alan's mom had Guillian Barre Syndrome when she was 45 years old. She died at 53 years old.

We have told every single doctor that Alan has seen about his mom having GB. Every single one of them said "oh, it's not related, blah blah blah".

By the way, Alan had some sort of Epstein Barre or Mono thing that put him in the hospital at the age of 32. It was never really revealed what he had, they just put down "fever of unknown origin".

So fast forward him to age 45 when he gets the pins and needles stuff and was diagnosed all these years as Idiopathic Neuropathy.

Dr. Goldfarb ordered the Spinal Tap, found an elevated protein and got him the IVIG.

Now his Primary Care guy is Dr. Fred (who has so many patients, he doesn't really remember all the background info on them). He sees Alan once a month, sometimes once every two months, gets him his samples of plavix and often sees him at the gym.

Today, Alan just came home and said "I just met up with Dr. Fred at the gym and I have some interesting stuff to tell you".

Dr. Fred said to Alan "tell me again, exactly why you are getting the IVIG, Alan?" And Alan goes, "Well, they found elevated protein my spinal fluid". And Dr. Fred said "oh, wow, elevated protein is an indicator of Guillian Barre". and Alan said "My mother had GB when she was 45 and I got the neuropathy when I was 45". Dr. Fred said "Whoa".

So I just googled up Guillian Barre and guess what it's a relative of???????

take a look..........................................

Chronic inflammatory demyelinating polyradicalneuropathy (CIDP), is considered to be a related form of Guillain-Barre syndrome. It is much less common than GBS, and evolves much more slowly and usually is longer lasting. Some CIDP patients experience periods of worsening and improvement, and individual relapses are often confused with GBS.
------------------------------------------------------------------------

Now how come over the past 18 years, NOT ONE DOCTOR WHO ALAN TOLD ABOUT HIS MOTHER, NOT ONE DOCTOR EVEN THOUGHT OF CIDP?????

I am absolutely amazed at the connection....

Any thoughts????

Melody

--when you first mentioned it over at the old Braintalk.

Thing is, most of the time, CIDP has primarily motor symptoms, which Alan does not seem to have, at least not to any extent.

Guillain Barre Syndrome is also generally primarily a motor neuropathy, although there are sensory symptoms that ocur with it quite often, and are often the first to show.

There are, however, primarily or exclusively sensory variants of both CIDP and Guillain Barre, apparently, and more research is starting to address them:

http://www.neuro.wustl.edu/neuromusc...m.html#variant

http://www.medlink.com/medlinkcontent.asp

http://www.neurology.org/cgi/content/abstract/56/1/82

Glenn:

All I know is that we saw countless doctors over the past 18 years and in every single appointment, I made a point to tell the doctor: "By the way, we'd like to bring to your attention that Alan's mom had Guillian Barre Syndrome and absolutely every single one of them pooh poohed me.

Every single one of them.

Why didn't the first neuro we went to see, at Coney Island Hospital, (I'll never forget him), why didn't he say to me "oh, his mom had GBS, let's rule out CIDP, just to make sure, let's give Alan a spinal tap".

If only, Alan might have not had to have 18 years of what he had.

I wonder, did they have IVIG all those years ago???

mel

P.S.I just went to one of the links and it was about Sensory Guillian Barre. Seems to fit Alan to a tee. Kind of like a variant of GBS.
jeez.

Melanie;

What you have told us scares the bejeezus out of me. (Excuse spelling of bejeezus if incorrect. I didn't want to use hell.) I called my neuro yesterday after a month of increasing pain that now covers both feet up to the ankles and both legs. She basically told me "oh well, too bad, take your meds and leave me alone now."

Anyway, I'm not just whining here, I'm just thinking out loud, "what if it is not idiopathic PN"? I'm not a diabetic and every doctor I see is so sorry that I am in so much pain but once they hear the word "idiopathic" it's like all bets are off, it can't be anything else.

So in 30 years, if I live that long, maybe they will find this is something else. So I know what you're say, Melanie and I can relate. Good Luck.

Nancy-H

--is that most doctors have not been taught that these autoimmune-oriented neuropathies may have a genetic/familial component.

However, it is well-known that many other autoimmune conditions, form MS to Crohn's, do "run in families". Celiac/gluten sensitivity, which can result in neuropathy, is definitely associated with a certain type of genetic human leukocyte antigen (HLS) profile. Autoimmune thyroiditis is strongly suspected of having a genetic component. And so on.

Most physicians believe that GBS and CIDP result from an autoimmune molecular-mimicry process that is a response to an infectious agent of some sort. While that may well be true, the tendency to react in such a way is probably more characteristic of some genetic profiles than others, or more likely to happen in those with certain proteins in their nerve structure that resemble those in various pathogens than others (which really amounts to the same thing--a genetic "tendency").

The doctors, like Dr. Goldberg, who were trained in autoimmunity and neuropathy, would be likely to ask the question, I believe. But most doctors do not have that level of knowledge.

This ain't a 'just whistlin' Dixie' site - is it?
This is why we need one another so badly.
Its a rare doc who thinks the info here is good for us, and
is appreciative of what we have to offer one another.
Some....... even are interested themselves.
(I think they lurk here anonymously)

Just got off the phone with my sister in law (Alan's sister). I was explaining the CIDP, the relation to GBS and I said "your mom had GBS, and Alan either has CIDP, or Senory GBS (Look that one up), but the treament is either Plasmapheresis or IVIG and Alan's getting the IVIG.

His sister hits me with "Oh, I have the pain between the three toes, and it has pins and needles, I've had this for years". and I get a shot of novocaine which lasts me 3 months at a time". I was incredulous. I said "you get trigger point injections between your toes"???? and she said: "well, you know that I was diagnosed with Morton's Neuroma".

Too bad I forgot to ask her if she has it in both feet!!!!

That would really tell me something (although I'm not sure exactly what)

Now years ago, when Carol (his sister) told me that she had Morton's Neuroma, I distinctly remember asking one of his podiatrists if Alan might have Morton's Neuroma (this was years and years ago when we were doing the IDIOPATHIC THING).

So the podiatrist said "no, Alan does not have a Morton's Neuroma".

Okay, I just googled up Morton's Neuroma. According to some foot sites, it's a benign nerve tumor, caused by ill-fitting shoes, aerobic exercise, etc. etc. It shows up in an x-ray and it involves ligaments, nerves, and it usually shows up in the foot between the 3rd and 4th toes. It did not indicate whether they give you emg's or nerve conduction test when you have this nerve tumor thing

Now his podiatrist has told Alan a long time ago, "you don't have Morton's Neuroma". I remember this distinctly. I believe the podiatrist was Dr. Passick from Coney Island Hospital who was a doll. He explained to me "Alan does not have a morton's neuroma", only I can't remember what he said.

Now here's my question. If a person actually has a morton's neuroma and NOT NEUROPATHY, when that person gets a nerve conduction test, and emg's and the doctor says "well, you most certainly have neuropathy, and they go into the small fiber, large fibre, blah blah blah, (which I never understood by the way), well, can you have a morton's neuroma and that is why you have neuropathy????

The symptoms are exactly the same by the way. Both Alan and his sister have pain, burning, between the toes. She never had an emg, or nerve conduction test. He has had plenty of emg's and nerve conduction, AND THE PROTEIN IN THE SPINAL FLUID.

Isn't it amazing, that they both have the exact same symptoms, but his are more pronounced when he is lying down in a certain way, or sitting in a certain way and the weather affects him greatly. With his sister, the shots of novocaine (trigger point shots I guess you would call them) well they do it for her for 3 months.

I, for one do not think this is all a coincidence. Pain, tingling, burning between toes, a brother and a sister, a mom with GBS.

No, I can't wait till I see Dr. Baird, his podiatrist. I have tons of questions to ask him. Thank goodness, he sees me as refreshing and answers all my questions.

Oh, Alan had a recent x-ray of his foot (where the ulcer was), and I would most certainly think that Dr. Baird would have noticed a Morton's Neuroma, right????

Will update when I get some answers from these guys.

Hope all of you who celebrate Easter, enjoy your Ham and other goodies!!!

bye for now, Melody

all my pain started out as Morton's Nueroma pain in my pregnancy in both feet and I had surgery in both feet and they grew back. Had surgery again and then the PN hit full force and the rest is history. No confirmed Dx yet.

Good luck.

Ann

Hi Ann:

Wow, is this not interesting or what??

Mel

Mel, When i first got PN, one doc sent me to a podiatrist and she tested me for Mortans neuroma, apparently a good podiatrist can do some sort of manipulation of your toes and can tell without an xray if you have a neuroma or not, she said i didn't have it.
Another uneducated doctor sent me for an ultrasound looking for neuromas [ in both feet ? very unusual but not impossible] it also showed no neuromas at all,
Mortans Neuroma can be easily diagnosed and confirmed with an ultrasound.

Brian