I'm wondering if all of you had blood tests indicating something autoimmune was going on that lead the doctors to order the LP.

I know that Alan has psoriasis, which is autoimmune, and had some positive autoimmune markers. Did the rest of you?

Because I have no markers for autoimmunity, and was seen at the Mayo Clinic, and by Dr Latov, as well as two other neurologists, and none suggested an LP.

Thanks

from my own experiences the testing for autoimmune markers was a two stage event.
The neuro who was in the process of diagnosing me was ever so politically correctly SLOW! So I went and got that good old 'second opinion' route. I don't know how it lucked out but I ended up with the head of the neuro dept at Georgetown Univ!! It was he that looked at me, had me do the walking stuff, the close the eyes stuff- I HATE that one TILT?, and then ordererd the MRI's to be set up and took a LOT of blood tests..He sent his diagnosis to ME with copies to my primary and neuro docs. As much as I respect G'town, I really cannot 'do' all the corridors from the parking lot to the offices...even w/valet parking. The G'town neuro ordered some more f/u tests and my neuro was nudged to take over from there-w/those blood work-ups and the spinal. The local guy now had the ammo he needed plus another doc to justify any and all concerns about diagnosis and treatments.
4-1/2 weeks after the tests came back I'd been cleared and started on IVIG.
My immune #'s were off kilter, I don't remember how much, but DO recall that it was flagged on the tests-for both the spinal and the blood works.. I also had other bloodwork#'s off kilter, nothing dramatic, but not enuf to then, nor do now make much sense. I WILL master those tests yet!
I believe in my case it was the pneumonia a few months earlier, how quickly the numbness spread for a while, then later only kept creeping up towards the trunk. I also believe that my thyroid, which had 'acted' up a few months after onset and before diagnosis [now diagnosed as Hashi's] was either a reactor or contributor to the AI#'s...but I'd only one blip in that quarter and no one thot to check the auto-i Thyroid #'s on that at the time, as basic TSH #s were normal once meds were adjusted...Same with the cancer aspect...that was NOT checked at the time of CIDP diagnosis. I do believe it's gonna become more common to have it done in the future tho...I don't think I could be the only human with all these things going on in such a short time span!
Long, complex-have had lots of time to think it out...I believe that it just took the pneumonia to start the dominoes falling, whether genetics or whatwhoknowsallels came into play. We are HUMAN, therefore we don't usually meet the criteria for being lab rats that are genetically engineered for much of research.
Well you now have the short version of my getting diagnosed and the whole blood work and spinal issues.
LizaJane, I was not at all internet conversant at the time this all was going on...I did and got all my opinions, second opinions and more opinions before I became so-it was pure instinct that nagged me to do MORE. I did learn tho - that I'd gotten things done correctily - thanks to your worksheets. Something I 'liken' to the 'roadmap' of the diagnostic processes. - j

Well said J thank you. Sue

LJane,
When I went to Mayo, I was on high levels of methotrexate and Humira. None of my blood tests were positive, but...they had been in the past. Maybe 5 years ago. I was considered sero-negative But I did have 2 positive lip biopsies for Sjogren's.

Billye

Joan, Al (channeled by Melody), and Billye--you all had your spinal taps AFTER there was evidence of an immune problem in the blood.

I'm working through some articles--want to see if it makes sense for EVERYONE to have an LP.

What I think is happening is that there are some changes taking place in the diagnosis of neuropathy. There are some advocating only a few categories:

1. GBS: In this group, some would say all inflammatory neuropathies belong. And all improve with IVIG or Plasma exchang. Usually it's motor, but not always. I think they'd put neuropathy associated with connective tissue diseases (sjogren's, lupus) in this category.

2. CMT: All genetic except Hereditory tendency for Pressure Palsy belong here.

3. Diabetic
4. Toxic

i think with this categorization there are many fewer idiopathic cases, but I'm still reading. When I'm done reading, I'll make it its own post.

But I'd love to know if anybody here has had a spinal tap with normal bloodwork? I'm beginning to think it makes sense.

Hi Liza Jane,

I had an LP after about a year with PN - which had been mild and then my sensosry nerves bite the dust after a 6 month long bout with C-Difficile Toxin (we dont know if the catalyst for the sudden loss of nerves was the intense infection for so long - or Flagyl, a neuro-toxin anti-bi I was treated with) or both, but when the docs got the results of those tests - ordered the LP - which was normal..... I believe my blood markes for ANA at the time were off - but not specific- and tests for SJogrens, MG, MS, etc. were all negative......... (my PN is predominatey sensory large fiber)

--at the same time the spinal/brain MRI's were ordered, but that is because at the time the Staten Island neuros were loking for MS or another central nervous system demyelinating disease--neuropathy had not occurred to them, as my symptoms were acute, body-wide, and entirely sensory.

Apparently, no one there had heard of acute sensory neuropathy as a variant of Gullain Barre syndrome, or of acute gangliopathy; I found out about these entities later as a result of Internet research. 43-year old presents with acute body-wide neural pain, without a single abnormal inflammatory or autoimmune blood marker (including an immunofixation electrophoresis)--what do you look for? Central nervous system demyelination. But---and this is where I fault many doctors--the other entites are certainly possible, and should have been known about, and considered, especially by neurologists (who are supposed to specialize in these areas, right?). I had to go to Cornell Weill to access doctors who were familiar with these entities and who were aware of autimmune reactions that involved specific antibodies to components of peripheral nerve, and who could run those tests.

The interesting thing was, all the assays for known antibodies to peripheral nerve came up negative for me. But when Cornell Weill ran their own ganglioside agglutinin assay--a "gross" measure designed to just check for demonstrable nerve autoantibody activity across the spectrum--that was a slight positive, implying that I had autoantibody activity, but it was not identifiable as part of a presently known category. Dr. Chin and I both speculated that this might have indicated autoantibody activity unique to my own small-fiber nerve structure. He and Dr. Latov and their colleagues believe, and have written, that many "idiopathic" neuropathies, especially of the small fibers, are immune mediated by autoantibodies that we have just not as of yet isolated/identified; after all, even the "known" antinerve antibodies have only been identified in the last 25 years or so.

The Cornell Weill group is well known as a strong advocate of IVIg; in fact Dr. Latov has argued that even if one has no specific "identifiable" autoantibodies, the result on the ganglioside agglutinin test, or a result of protein in the cerebrospinal fluid from lumbar puncture (and lumbar puncture is on the Cornell protocol as part of secondary neruopathy investigation), is enough to argue for a trial of IVIg. This is considered a fairly radical stance in immunity circles at this point.

I was not offered IVIg, as my neuropathy was acute and apparently monophasic, slowly improving over time, but if my symptoms had assumed a more CIDP-like relapsing-remitting pattern, the staff said they would have recommended it. I do know there are some people getting IVIg infusions at Cornell-Weill based on what other researchers would consider less than slam-dunk evidence of autoimmune factors. (I've had some interesting conversations in the waiting rooms, as well as with Drs. Chin and Latov.)

so if you had a flare, you'd do IVIG?

There is something that has not been addressed in these postings about lumbar punctures.

Do you know that there are people who wouldn't have an LP if their life depended on it ? And I mean that literally. There are some people who do not go to the doctor FOR ANY REASON.

My friend's father had lung cancer, they found a spot on his lung and told him to come in a few weeks later so they could decide what treatment would be necessary. That was it. All he heard was "he had a spot on his lung". He never went back. He never went to another doctor again. He got sicker and sicker and would not go anywhere but to his bed. For some reason, they never had to rush him to the hospital. His wife, my friend's mom, was 62 and her husband was 74 when all this happened. She took care of him for one year. Then the people from hospice came so she could go shopping one day. The next day, my friend's dad died peacefully in his sleep.
I always wondered, if he had gotten treatment, if he could have beaten. it.
And forget about him ever allowing an LP.

And my friend around the corner, her huband was 63 and he had a pain in his stomach. He did allow some testing, they said he had colon cancer. That was it for him too. All he would allow was chinese herbologist and some kind of medicine they would rub on the outside of his belly and the herbologist gave him pills. Nothing worked. Only when he began hemmoraging did he allow his wife to call the doctor. That was it.

People's fears are preventing them from getting treatment. I know many people and not too many of them would ever go for a lumbar puncture. Even when I tell them that Alan went and because the guy used the fluroscope thingee, Alan felt nothing. They don't believe me. They all say: "Forget it, they're not doing that to me".

Thank god, we have these forums where we can bounce ideas off of each other and offer support. It's really neat!!

--if I had a "flare" that was very long lasting, and did not seem to be one that involved "healing", but actually (and perhaps other testing would need to be done with this, like another skin biopsy that had worse results than the previous one) seemed to indicate a relapse in my neuropathy, Iwould certianly consider IVIg (and I bet the Cornell-Weill people would recommend it if there was such evidence).

My greater problems lately seem to stem from the right side radiculopathy--symptoms there are basically stable, though they fluctuate slightly depending on what pressures are put on my neck and shoulder. The most recent cervical spine I had shows basically no change from the one I had nine months ago--there's still osteophytic complexes at C5/C6/C7 and a considerable neural formainal narrow on the right side at C6/C7, withonly minimal disc bulging. So, I'm not a surgical candidate, though I do bear watching.

(I've really got to make time to go get good myofacial release therpay on the right shoulder/back--that my insurance will at least pay for partially, LOL--my symptoms do seem to be somewhat correlated with the degree of tightness there. The neuros don't think so, but I suspect there may be a double crush phenomenon with the brachial plexus contributing to the symptoms.)