well, i talked to the neurologists assistant who went and looked at my chart. she told me the diagnosis is sensory motor polyneuropathy with the possibility of CIDP.

i've tried looking all that up and it just seems to me that it's a variant of PN but what kind of variant i couldn't figure out. maybe it's just a catch-all. are there any special things i should know about these two possibilities that aren't covered here in general PN discussions?

also -- i wonder if my hypothyroid condition could have caused this in the first place? the dr who diagnosed me told me i was two weeks from falling into a myxedema coma. as i remember it, my fingertips were numb at the time, altho feeling came back after a few years. (not so my memory, which was permanently altered.) wonder if that could have caused the numb feet. hmmm.

I think, Yes, to your hypothyroid question. That is how my PN started too, with thyroid being low. Most of my PN then resolved about a year after starting thyroid hormone.
But insulin resistance has become a new player in my body, so now some of it is back. I believe I broke my sesamoid bones hiking back when my feet were pretty numb (early 30's for me).
That has led to tendonitis and arthritis in my feet, etc, but I am no longer numb. The thyroid hormone fixed that for me. Also my hands which were very affected are now pretty okay. Only overuse of the wrists will give me tingling/numbness and I wear wrist splits to bed for a few days, and it passes.
Low thyroid leads to deposits of tissue in the areas of the wrist and ankle which can cause compression of nerves as they go under ligaments there.
I have not had much motor problems. I have no atrophy, but when my carpal tunnel was at its height of agony during my pregnancy 30 yrs ago I lost about 80% of my motor control of my fingers. Strength slowly returned after delivery--- the hormones women have during pregnancy cause further edema and compression.

CIDP is sometimes treated effectively with IVIG.
http://www.cidpusa.org/P/ivig.htm

Demyelinating neuropathies are often assaults by autoimmune processes in the body. IVIG can stablize that.

This--
 

--would be a good place to glean some understanding of CIDP and its variants, Linter:

http://neuromuscular.wustl.edu/antib...mdem.html#cidp

thanks for that!

meanwhile, i've made an appointment for a second opinion at the Peripheral Neuropathy Center in NYC.

oddly enough, i can feel my right foot/calf getting more numb by the day. or at least i think i can. maybe i've talked myself into increased numbness by reading all the stuff i've been reading the last few days.

appointment is on the 18th. we'll see what the new fellow says.

in any event, i do think i should get a lumbar puncture, and if i call my current neuro today i bet i could get in well before the 18th.

think i should wait or get the LP sooner rather than later?

i would see what they say when you go to NYC but i wouldnt hesitate to get one and im glad that i did since it put my mind to rest about a few of the less desirous possibilities.

makes sense to me. i guess a few weeks won't make a diff ... right?

no it wont.

When you go for your new testing/evaluation I would ask for further testing for CMT to see if you have that.

I am concerned that you have muscle atrophy. Involvement of motor pathways, is more serious IMO than pure sensory type which is just bothersome and painful.

Demyelinating neuropathies can respond to IVIG so to get that you need a good diagnosis.

I'd also explore gluten intolerance. Progressing neuropathy can indicate that you are still exposed to some trigger...and gluten is a common one.

Identifying the 'triggers' can be as important
as diagnosing a 'cause'- because avoidance of triggers
can make one's life much more comfortable.

If you don't find the cause, but can be pain and
symptom free because you know your triggers,
can mean all the difference in the world to your daily life.

What about eliminating all triggers?

1. bottled water only
2. organic foods only (exclude night shades)
3. no salt, sugar
4. air purifier if in the city
5. supermarket shampoo, soap, household cleaners etc etc all to be replaced with natural alternatives.

of course the list could go on
zero triggers should and probably would improve quality of life dramatically.
just a thought .