Hi,

I have an auto-immune PN (assumed anyway CIDP) - but I'd like to see a doctor that will really look at my immune function, etc... right after I got PN my neuro sent me to an allergy doc - it was crazy cause as far as I knew I had 3 allergies - thats it - I tested positive for 80% of all the stuff they tested for, and they repeated the testing on another day to be sure it was accurate....

That was six years ago - and I'd like to have someone take another close look at my immune system - but not sure what type doc best to see - an allergist/immunologist, rhuematologist, or endochronologist? (want them to be knowledgeable about the PN too)... dont have a GP right now so no one to recommend who would be best?

Thanks

You have touched my heart...But I'm the one who let a wound nurse,send
me to a Derm Dr. ended up with a third degree burn,ended up back in the very same burn and wound Clicnic. I can only read,I will,heads together
everyone....Hugs to you Sue List who you have seen,not names,
just list the type of Drs.

--usuall, allergists and rheumatologists are the doctors that specialize in immune function, but in my experience, many allergists and rheumatologists actually have fairly narrow foci. The former tend to look primarily at the IgE, or possibly, IgG immune complex reactins to outside substnaces; the latter seem to focus on primarily the vasculitic diseases associated with the anit-nuclear antibody (ANA) and its variants.

Not many of them are familiar with a lot of the strange autoantibodies to nerve components, mnay of which have only been identified in the last twnety years or so. But, of course, not many neurologists (except those who specialize in these areas, such as Latov's group) are that familiar with them, either.

I think the way to go is to look into particular doctors/practices, and not to worry about the specialty--good doctors often are highly cross-disciplinary, anyway. Problem is, I'm not familiar with anybody with autoimmune neural expertise in your corner of the world--but I wonder if any of the neuropathy support groups there would be.

I had to first look up definitions, then I'm still not a whole bunch clearer, but here are some sites I've found.

Definition Immunologist: http://www.aaaai.org/springallergy/2003/whatis.stm

Definition Allergist: http://www.allergychannel.net/allergist.shtml

Immunologist Assn's Doc finder: http://www.clinimmsoc.org/referral/

Allergist Doc Finder: http://www.acaai.org:80/LocateAllergist/

I found no Immunology or Allergy assessments in the US News Top Hospitals:
http://health.usnews.com/sections/health/best-hospitals
But they do assess Rheumatology...At least if there isn't a TOP hospital in your area, there mite be a rheumy who's trained at one.

I also came across this about docs which is off this particular aspect but is about docs and finding one/or firing one: http://www.cnn.com/2007/HEALTH/08/16...doc/index.html

Hopes this all helps! - j

I would have thought that finding good docs, whether in Immunology, Allergy, Rheumatology OR Neurology would be a hotter topic than it seems.
How to FIND good docs, where to find them, the resources to use to find them AND how to 'vet' them I thought would be a hot topic.
Guess I am wrong? Surely I am not the only person who has had issues? Thanks - j

I have hestitated to answer this because I don't really know if I can help. The doctor who diagnosed my Sjogren's and my allergies was an ENT. He was pretty knowledgeable about autoimmune disease and the whole allergic response connection, but I never thought to ask him about neuropathy.

fanfaire

The only docs I've seen since I got PN are neuro of course - the allergist (and only for the initial evaulation) - cardiologist (who I've seen for almost 20 years cause already had heart rythm problems, GP, spinal surgeon who wants to operate and not related to PN, rhuematologist once when sent by neuro, yearly girl stuff, oncologist when had postive amyloid biopsy and skin cancers, and GI docs for gastroperesis.... if my immune system is so compromised - I feel like it should be checked but I'm not sure how or in what capacity.... the allergist wouldnt even give me allergy shots cause i went into shock when he was doing testing and felt it would be too risky - the PN "expert" I saw out here for 3 years wouldnt give me IVIG for the same reason - the last neuro would but now my insurance has dropped it - but no one is looking at the whole picture.

I actually saw a doc that was recommeded by a doctor I really respect the other day - he refused to take me as a patient because I'm too "complicated and would take too much time"... I know we have some well known hopsitals in LA - but if you look at the credentials of the majority of the docs - they are not impressive... I've had some good docs (the best have been the oncologists) - and some really awful ones - and been told many times to "go to Mayo" - but its not an option for me....

Dahlek - good info - thanks..

And Glenn - is it the PN assoc that has the support groups? I talked to them when I first got PN - most of the members were very elderly and had diabetes or just PN due to age - so they discussed therapies for pain basically.... no younger peeps (I've yet to meet someone out here my age with auto-immune PN issues)..... Would you know of any other resources for support groups??????

Kmeb,
I didn't answer this right away, because you are so complicated. Then I put myself in your position and decided that if it were me and only if it were me, I'd try to find an endocrinologist, infectious disease specialist and a neuro that would listen to what they say. It is a tough decision to do this I know. Wish I could help more.

Dahlek those are good sites you posted.

Billye

The whole set of 'complicated' issues depends on what all came first?
Before PN I had the following stable of docs:

Gp
Gyno
Allergist
Orthopod
Podiatrist
Dermatologist
Opthomologist


Since then I've acquired the following:
Neurologist
Oncologist/Hematologist
Plastic Surgeon
Endocrinologist
Physical Therapist

I have some others in my 'stable' but these are the key folks...Gotta tell you that finding/deciding the right person/specialist to call about anything..and not sounding stupid is one hard decision. Whenever something happens, I have to try and THINK about three times longer than a normal person about WHO to call and get the best first/fast treatment....without stepping on other docs' toes that is.....Usually tho the first ten minutes I can sit down [ideally near a phone] I mull over which 'ghostbuster I'm a gonna call FIRST? then aside from going 'GOLLY GOSH! SUPER DUPER DURN IT!' I am able to figger out who to call next?

When I was referred to an 'endo' last year, my reaction was somewhat blase...I mean, fudge! Whats' one more? This last doc has been a dear tho...I keep counting all stars above with my luck in this quarter.

I truly hope you ALL get lucky as well? 's - j

UMMM? Did I tell you that scheduling appointments is kind of kinky? Dates for tests, exams etc.. some of those are sort of well, insurance picky/sticky. Life goes on, with some wrinkles in it?