Specific Results:

IMMUNOFIXATION No M band identified
ANA NEG NEGATIVE
RHEUMATOID FACTOR 0.0 - 14.0 IU/ML 8.8
ESR (SEDIMENTATION RATE) 0 - 20 MM/HR 18
PROTEIN TOTAL, SPE 6.10 - 7.80 g/dL 8.30
ALBUMIN SPE 3.50 - 5.30 g/dL 4.82
ALPHA 1 GLOBULIN SPE 0.11 - 0.31 0.24
ALPHA 2 GLOBULIN SPE 0.58 - 1.16 g/dL 0.94
BETA GLOBULIN 0.59 - 0.88 g/dL 1.03
GAMMA GLOBULIN 0.50 - 1.35 g/dL 1.26
ALBUMIN %, 57.4 - 65.5 % 58.1
% ALPHA 1 GLOBULIN 1.8 - 3.8 % 2.9
% ALPHA 2 GLOBULIN 9.5 - 14.3 % 11.3
% Beta Globulin 9.1 - 10.9 % 12.4
% GAMMA GLOBULIN 8.2 - 16.7 % 15.2
ALBUMIN/GLOBULIN RATIO 1.39

Stacy,

I think she will likely proceed with 'standard' PN testing...labs first (which she's done the very minimal basics), then an EMG and NCS. These would only be helpful if it's large fiber neuropathy...but they are usually done first to rule out conditions involving large fibers.

Then she may/may not consider the skin biopsy. It is very minimally invasive and the only test to really confirm SFN. If this is SFN, then it would narrow the causes and make some treatments available to you. If she offers it, you should consider if you want to confirm/deny SFN.

I agree that she should AT LEAST consider the EM since you have some of the classic symptoms. You will just have to ask her outright why (SPECIFICALLY) she's dismissing it. I would also ask if she has experience with EM. She may not and this may be why she's discounting it. If she gets her panties in a wad over you asking whether she has experience with this, then so be it. You need to know if she's qualified to assess the EM condition. The egos on neurologists are quite large, so they sometimes get offended if you present your own diagnosis, etc. I think you bring up the EM is perfectly appropriate, but she obviously didn't. Sometimes you can get them to consider things IF you present so they think it was THEIR idea;)

How's the neurontin going? Does it help at all now that you've taken it for several days? What dose did she start at? I'll assume she started low with room to increase slowly to see how you tolerate it.

DNA Testing
 

Stacy,

My guess is that the "kit" you refer to is a DNA test. I had those as well, and someone came to my house to draw the blood and sent the kit back east via FedEx for testing. It is very expensive, so your insurance has to approve first. I hope you get the answers you are looking for.

My SFN is still idiopathic and I'm still searching for the reason I have SFN twenty years and four months later. I hope you find a definitive diagnosis right away so that you have peace of mind.

BTW, what is EM?

Isn't testing for gout just a simple blood test for uric acid? I believe this is part of a BMP or CMP panel, isn't it?

You're right, gout does present with swelling, pain and redness! Does it usually appear bilaterally though? And would it encompass the entire foot...or feet in this case?

When bad it can be in both feet. Depends on the circulation of the person and other factors.

I've seen a few people with white deposits along tendons, in the hands even. One fellow said he had attacks every time he was sick with a cold etc. When white cells are destroyed during infections or after infections, they release lots of purines.

Some people with high uric acid don't get attacks and others with less high levels may have lots of attacks.

The long term use of that HCTZ tends to create gout. My mother had spells of it from the same drug, many years ago.
And yes, I would think some other general tests should be done.
EM can come from a condition which has too many platelets in the blood. The platelets clog up the little blood vessels etc.
http://www.drpribut.com/sports/erythromelalgia.htm

Stacy,

After reading the link MrsD posted and looking into EM a little more (I know very little about it), I think you should ask about some routine blood work (CBC, CMP) as well.

EM can be caused by SFN as well as several hematological disorders, so it would be helpful (and faster) if she ran some simple blood tests WHILE she continued the diagnostic process.

http://en.wikipedia.org/wiki/Erythromelalgia

This way she can rule out gout, and other blood disorders (even ones associated with EM) at the same time as she proceeds with neuro testing and hopefully EM evaluation.

I'm not sure I saw or remember your original postings, but did your symptoms start with PN type burning BEFORE your got any swelling/redness or did it all start together? How long has this been going on? Was it sudden or slowly increasing over time? Sorry to have you repeat what you've likely stated long ago.

The "kit" that you reference makes me think they have ordered DNA test(s) for you. I had several as well, and they sent a phlabotomist (sp?) over to draw my blood and she sent the kit back east.

I hope the test(s) provide the diagnosis you are looking for re: your PN.

Best,

Jason

Thank you all for your suggestions, and I will be writing them down for my next appointment.

The Gabba is helping at night, I am actually surprised it is. I am sleeping from 10pm to 7am now, in my bed, no couch, no more water baths. I am actually surprised that even when I wake at 7am my feet are not red, hot, swollen. They are white (normal color white) and the left foot always feels like pins and needles but to look at you cant tell anything. Feels like when your feet go to sleep and you stand on it pins and needles but magnified 10 times. I am very surprised by this, as Gabba can not do anything but block pain, so why are they not having flares in the night, unless I sleep through it which I can't imagine. Also why not red in morning? It is very surprising to me.

Days are better to, though I do not take medication other than at 10 pm. No water, no fan, and as long as I am not on them too much, good. Though taking a shower and getting ready always results in a huge flare and water bucket.

Between 5pm and 6 pm is like the switch is turned on and they begin to get hot. Without fail, every night about this time. However, the flares are less in intensity, no more huge swelling and huge pain, just normal burn/redness.

Hubby and I both believe the niacin was the trigger of my downfall and as the Gabba helps with pain and the days go by they are calming down from the huge reaction to the niacin.

Gout seems like when I read about that, my symptoms do not present as gout MrsD but I will certainly ask her about it.

Thank you for all the suggestions and help, I will present them in a couple weeks when I go back.

Ok so I got the kit in the mail and spoke with them today.

The test is $2,800.00 (not withstanding insurance)

It is Small fiber painful axonal neuropathy profile
panel that will test for PN and the diseases with it.

Looks for antibodies HU and sulfa tite antibodies which attack nervous system. If I wrote that down correctly, I was on my own with spelling and such as she spoke and hope I wrote it down right.

TTR test arythmia,carpal tunnel stuff like that, she said others, could not write fast enough, mutation in that gene.

She said it was 2 anitibodies test and 1 genetic test.

Anyone know what this is? Is it worth it to do this test?

I found the web site, this is the exact test:

http://www.athenadiagnostics.com/con...detail/q/id/27