Tuesday, November 22, 2011

Lupus or Not?

I had my appointment with the "specialist" today.  I put quotation marks around "specialist" because I'm using that term loosely. It turns out that she was another dermatologist in the same practice who sometimes sees patients with cutaneous lupus, which I'm pretty sure I don't have because I do not have the typical scaly rashes associated with the disease.  I was expecting someone who was actually familiar with autoimmune diseases in general, including the systemic version of lupus. 

Here's why I think the doctor did not do a good job. My blood pressure and temperature were never taken.  I was wearing jeans and a sweater, yet she never asked to examine my skin. She did not examine my nails (which, by the way, are soft and have some pitting). She never looked at my scalp or examined my hair (which I'm losing), which was my main complaint to begin with. She never asked about my energy level (terrible fatigue), lymph nodes (they're sore), any rashes (eczema and past photoallergic reaction), etc., etc., etc.

What she did do was tell me she didn't think I had lupus or any sort of autoimmune disease....based on what? I'm not sure.  She simply said I didn't fit the criteria. Considering she didn't ask me many questions or do any examination at all, I don't really know what "criteria" she was referring to.

I can only guess that she was referring to the lupus diagnostic criteria developed by the American College of Rheumatology; however, she never asked me about most of those symptoms, and I'm pretty darn sure it's impossible to know how someone's urine is doing without a test.

Don't get me wrong. I don't actually want lupus.  Heck, I don't want CFS/ME or anything else for that matter.  I just want to know what's wrong with me, and I would like a doctor to be thorough. If I'm seeing a dermatologist, I would expect that person to examine my skin, hair, and nails. She did exactly none of the above.

What she did do right was order some appropriate follow-up tests (in no particular order):
  • Anti RNP: often found with many autoimmune diseases
  • Anti Ro/SS-A and Anti La/SS-B: often found in people with Sjogren's syndrome or cutaneous lupus
  • Anti Scl-70: often found in people with scleroderma
  • Rheumatoid factor: high levels often found in people with rheumatoid arthritis
  • Anti double-stranded DNA: found in 30 to 50% of people with lupus
  • C3 and C4 Complement Proteins: low levels may indicate active lupus (or other infections)
  • C-reactive protein: high levels indicate inflammation, people with active lupus or other types of inflammatory diseases or other infections often have high levels
  • Erythrocyte sedimentation rate (a.k.a. sed rate): people with active lupus (or other infections) often have high levels
  • Thyroid peroxidase antibodies: presence indicates autoimmune thyroid disease
  • Hepatitis panel and HIV: I'm not entirely sure why she ordered these because I don't have symptoms or risk factors, but whatever...

What she didn't order, but I think she should have are: urine test (presence of protein indicates problems with the kidneys) and Anti-Sm antibody (found almost exclusively in people with lupus; 20 to 40% of people with lupus have it), parasite tests (some of my most recent blood test results could indicate allergic response, autoimmune disease, other illness, or parasites).

What she didn't order, but could have because they wouldn't be a bad idea: anti-histone (sometimes found in people with systemic lupus, but often found in drug-induced lupus), anti-phospholipids (found in approximately 30% of people with lupus).

In case you were wondering where I was getting my data and suggested tests, here are the links to the Lupus Foundation of America and the Johns Hopkins Lupus Center.

Speaking of blood test results, the following things were normal (or at least normal for me) for the tests the original dermatologist did about a week and a half ago: RBC, Hemoglobin, Hematocrit, MCV, MCH, MCHC, RDW, lymphocytes, monocytes, platelet count, ferritin, glucose, free T4, TSH, RPR (syphilis), DHEA. Here's a link to understand what some of the acronyms stand for.

The following results were abnormal:

Obviously, something is going on in my body.  I am anxious to get the results of the tests they drew blood for today, but it will be at least a week or two. The doctor today did also mention one thing that makes good sense. She said if my follow-up blood tests come up negative/normal, it might be a good idea for me to see an immunologist.

In addition to the wacky immune system results above, I have chronically low Natural Killer cells (not unusual in people with ME/CFS). On a side note, I found an interesting web page with info about NK cell deficiency. I have never heard of this website before, so I have no idea how legitimate it is. Read at your own risk.

At some point after I get all my results back, I will be seeking a second opinion. I am tempted to see a rheumatologist/immunologist who specializes in lupus and other immune system diseases. That person might be able to sort through all my weird results and help figure out why I'm losing my hair!

I'm exhausted. Good night!


Joanne said...

I would assume you have seen a Lyme Literate Medical Doctor to rule out Lyme Disease the test for that is only 50% but you don't even seem to be tested for it and many of your symptoms fit.

upnorth said...

I think some Drs. as soon as they see M.E./cfs on your chart, write you off. I went to a ENT specialist for my throat/lymph node issues and can you believe he never even palpated my glands???

I could tell from the start that he didn't want to take me seriously. He looked in my throat (which was terribly sore that day) and said he saw "nothing". Other drs. and specialists see swollen tonsils, red cressents, blisters, etc.

FOr some reason I just though that hair loss was really common with endocrine issues such as adrenal, thryroid, pituitary and hormone issues.

Your blood results are interesting...I have a form of neutropenia (low neurtophils) on and off and they believe it is viral in origin....

As I said previously, I really hope they find something they can treat that will help with the hairloss and just for you to feel better....let us know what happens.

jenji said...


Have you been to see an infectious disease specialist?


Anonymous said...

Or a Lyme disease specialist, for that matter. :\ It can cause.. pretty much everything you have wrong.

a rainbow at night

alyson said...

Hi all! Thank you for the comments. I have been tested for Lyme disease. Fortunately, my ME/CFS doctor is very familiar with Lyme disease. It is my understanding that she has even published research on the disease.

I have not been to an infectious disease specialist, per se, but I have been tested for all sorts of things. I know that I often carry high levels of EBV and HHV6, for example.

upnorth, after my experience with the dermatologist, I can believe the ENT never palpated your glands. I have found that quite a few doctors either don't take CFS seriously, or they are quick to blame all my symptoms on it (without looking for alternate possibilities). It can get quite frustrating!