Test results...sorta?
 

I got a letter today, and it did not contain the specific results but I will ask for them, however the letter said:

Your bloodwork showed normal serum protein electrophoresis, normal sed rate, negative ANA and RF. All these mean we have not found inflammatory causes for your burning pain.

Anyone comment? I am not sure what any of this means specifically other than no inflamation, which is shocking to me.

Do these sound like normal tests to check for PN??????

It seems odd she only tested for inflamation.

I think it just means that your pain isn't caused by inflammation from RA or artheritis. They are just testing to make sure you don't have a unlying condition that is causing the burning pain. Peripheral Neuropathy is neurological in nature, I imagine they will next test for causes, such as small fiber neuropathy etc.

It seems like she should have tested for more things than just inflamation. :confused:

I mean, at this rate, making me come back every 4 weeks and only running such limited tests, I will be broke or dead of pain before she figures anything out. Not that she is ever going to.

This feels like such a waste, when in the end, it will just be...who know what, but take your pain meds and go home.

Is she a Rhumitologist or a Nuerologist? My Rhumitologist did the same tests, they came back normal, so she put me on anti inflamitory drugs, even after telling her I didn't have inflammation. But, I guess that is the steps they take to rule out all the possibilities. Tests for PN are even more expensive, that is why she is starting with the cheap blood work.

Skin biopsy
 

Stacy,

The gold standard for SFN is the skin biopsy. It is expensive, so make sure beforehand that your insurance will cover it. It takes two weeks for the result.

I had one in 2013 that I was certain would come back abnormal due to my sensory symptoms. Alas, it did come back abnormal, demonstrating decreased nerve fiber density in the skin.

If you suspect SFN, this is the test that I would be seeking if I were you.

I sincerely wish you the best in your journey.

Jason

And--
 

--though a serum protein electrophoresis was done, this may not be specific enough to check for monoclonal antibodies, or M-proteins, which are rogue antibodies that cross react with some nerve epitopes and are known to cause neuropathies:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

To detect these one should have the more focused immunofixation electrophoresis of serum and urine done, along with an immunoglobulin enumeration (to see how much IgG, IgA, and IgM you have--this is usually done along with an immunofixation).

I am going to be more forceful about EM when I go back. From everything I read and see, that is EXACTLY what I have.

I will not be doing a skin biopsy, it will not help my situation, especially if I am correct about EM.

She did order more blood tests, she said my insurance MUST approve it first as it is very expensive. I have no idea what test it is and I have not heard from them or my insurance. She said if they approve it, a "kit" will be set to me in the mail and I take this kit to a specific place to have the blood drawn and there is only one lab in the usa that does this.

Sounds like your doctor is starting with the obvious. Your feet swell up... may be inflammatory since you have Hashimoto's.

Just to compare... I have had elevated ESR forever...never positive for RF, or ANA. But I have had two episodes of drug induced lupus (which often does not elevate ANA).

So people are different in how they present with problems of pain and swelling.

RF blood work BTW is not very accurate.

http://rawarrior.com/how-is-rheumato...tis-diagnosed/

Remember testing is only a snapshot in time...The results may change in the future. Visual presentation of observable phenomenon still remains at the heart of all diagnosis.

I'd keep a journal of each day. Finding a trigger to your flares and better days, will always be helpful to you and your doctor.

Any suggestions on how to get her to even look at or consider EM? I do not think she knows what it is. I tried to get her to read a print off but she "glanced" at it and handed it back to me and said no, its PN.

I want her to consider EM because there are other avenues to pursue in treatment. Though I believe I will have to find another doctor to get this accomplished.

What do you all think her next step will be if she is following a supposed "normal trail of PN testing"?

My doctor took several weeks to get in gear regarding my
angioedema. She has colleagues at a teaching hospital and often consults with them too. Their availability etc is an issue.
And at least she knew about and we discussed it.. and based on her CME recently and adding up all my "incidents" she now has given me that diagnosis.

I asked for the angioedema testing which she was reluctant to do in the past....but she then tuned up on it and did it for me last checkup. The results were fairly normal, but she said I'd have to be in a flare to show much in the blood work.

You have to give some doctors the chance to work for you.
If you stress your loss of quality of life, pain, etc, she will likely be more motivated. Doctors don't like you to diagnose yourself.

I still think you need testing for gout, and heavy metals.
That HCTZ you take is notorious for causing gout.
http://www.nlm.nih.gov/medlineplus/e...cle/000422.htm

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

What is the genetic test? I didn't see it on the site you posted. Thank you.

I dont know Kitt, she spoke fast, I wrote the main words I heard, lol. Then I found the exact company and test in the link so whatever that is.

I know about Athena Diagnostics. Tests are very expensive. I was just curious as to what genetic test. Thank you for your answer.

Nobody here knows of this test and if I should do it? It must not be very common.

Maybe not. It would be interesting to know what the genetic test is for though. Athena Diagnostics is well known.

The tests listed there--
 

--are for very rare causes of small fiber neuropathy, and are associated with other conditions, most commonly blood cancers in the case of amyloidosis and small cell lung cancer in the case of the anti-Hu. (I'm actually surprised the tests doesn't include the anti-Ri and anti-Yo antibodies assays as well for that price, as the Anti-Hu, anti-sulfatide and amyloid tests are done by other labs, notably Quest, and I don't think they're quite that expensive.)

Thank you for that, that is kinda what I thought, about the cancer. It just does not seem like tests that I need. I will not be doing this.

The lupus one is not even a good lupus test from what I can tell.

I have been seeing a geneticist. Does anyone know if insurance covers them? I would like to have some testing based on my symptoms.

Has anyone seen a geneticist?

Thanks!

A phone call to your insurance company should get you the quickest/most definitive answer. If the initial answer is "no", ask about referrals and/or appeals processes.

Doc

No, I have not and I am probably NOT going to do this test for several reasons. It is not covered by insurance nor will it even apply towards my 5,000 deductible. But the main reason is I just don't see a reason for this. With a forum of you all and it seems nobody here has done this test, that speaks volumes to me. The lupus test is not the best lupus test to take, and I do not understand the importance of the cancer test, the amyloidosis. It is rare and I just dont understand why start with such expensive, rare, tests.

Thanks! What I meant to say was I have been thinking of seeing a geneticist. I just wonder if this is something genetic. Since my sister has Crohn's disease. My sister who passed had RA. My father always complained of leg pains. My uncle had neuropathy but they thought it was alcohol related. I think I remember my father saying his father had leg pain.

My fathers family all had something that caused them all to have heart disease also. Many heart attacks and strokes at very young ages.

I've been wondering if this is all related. No one ever thought to look for any genetic link.

Just a thought!
Hopeful

I have been to a geneticist--
 

--but for a very specific reason; since I had hyperparathyroidism, and surgery to remove the offending enlarged parathyroid glands showed hyperplasia in multiple glands rather than a secreting benign adenoma (the most common cause of primary hyperparathyroidism), there was some talk of the possibility of multiple endocrine neoplasia syndromes, the genetic markers of which can be tested.

Doesn't seem I have those, but the Columbia Presbyterian people are interested in that I may have an isolated familial parathyroid syndrome--my mother, some years ago, also had hyperparathyroidism (though she had a gland with a secreting benign adenoma removed).

Since this was referred through my primary care physician and my endocrinologist, and since the doctor involved is primarily a gastroenterologist who is on my insurance who heads the genetic team at Columbia, the consult and tests were covered.