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