undiagnosed

[Andrea0414]

I'm a 38 year old female. I have had an on and off again rash on my upper arms for 4-5 years. It used to get it once in awhile, have it for a week or so and then gone for months. For the last year it has been there more and more. And I have had it now for over three months. I went to my MD 2 weeks ago. He did a cbc with differential and several autoimmune test.

Some of my results:
Elevated lymphocytes
Elevated monocytes
low b12 level

Ana 1:1160 speckled
SMA 1:80

Skin biopsy probable for lupus.

My Doc thinks I have discoid lupus. Of course, I have tried to research all of my symptoms and test results. I tried to talk to him about Autoimmune Hep b/c I read that a high SMA level is seen in AIH and NOT present with Lupus.

I dont have liver problems that I know of. I have extreme fatigue. Some muscle aches expecially in my legs. Arm rash and now have it in the roof of my mouth as well.

Any input would be helpful. I go to see a Rheumatologist in February. Long time to wait for answers. I see my MD next Friday and want to ask for some liver test but he blew me off when I mentioned AIH before.
Thanks, Andrea

[margypops]

PS the mornings are worse , do you find that I do not sleep much,another symptom, but when I get up my legs ache and my feet hurt this all goes away about 2 hours later, my DH thinks I am nuts ...

[margypops]

Tell you what guys I have been reading all the posts searching for clues as I have all the symptoms ...I have started to wonder about the enviroment I live near Los Angeles and I have gradually got worse soince I moved house,I am living in Wine country and I wonder if I am allergic to any pestisdes etc they put on the grape vines I have been trying to track down if I have low thyroid and Lyme disease as I was bittten in England many years ago ..the Doc said he thought it was ebv  I dont think hes right ...

[Zizle]

Yes, I had mono as a teen. But apparently almost the entire population develops it at some point with varying degrees of severity. Epstein Barr Virus was once thought of as a cause of autoimmunity, but now it seems it just needs to be there to develop autoimmunity, but it alone is not a cause.

[Andrea0414]

This is all so overwhelming. So many causes and not enough answers. I ordered "The Lupus Book" by Dr. Wallace and it should be here on Thursday.
The cream for the rash (rash is on my arms and back) seems to be doing something. It looks like it is drying up somewhat. The doc said I should see a difference in a week or so if the cream is going to work but I dont see how this cream will stop future break outs. I've noticed a few more small break outs forming.

with your Sm antibody. Did you ever have mono? I did wonder if it has anything to do with it.

[Zizle]

Even better:
http://www.epa.gov/myenvironment/

[Zizle]

This is the website mentioned by the book. You can find all Superfund sites and every day toxic waste producers according to zip code. Don't be too alarmed by the maps - they include dry cleaners, gas stations, medical facilities, etc. Superfund sites are the most worrisome.

http://www.epa.gov/enviro/emef

[Zizle]

I just bought the book The Autoimmune Epidemic and read it all in 3 nights! It was truly eye opening. Diet is probably less responsible than environmental pollution, but improving your diet should help with symptoms and disease course.  Many theories abound about autoimmunity - I have the following factors that may have contributed: Mono (Epstein Barr Virus) as a teen, Hep B vaccination in my 20's, oral contraceptives for 10 years, severe gastrointestinal illnesses while living and traveling abroad (Maybe I picked up the wrong bugs?), having children (microchimerism - maybe my body is battling fetal cells from my son that persist in a mom's body?), but the book reminded me that all the chemicals around us that have increased in the last 30 years are poisoning us and making our immune systems be on high alert all the time. Mercury (in the air, water, fish, vaccines, etc) lead, PCBs, pesticides, pthalates, parabens, etc. Our bodies are a toxic waste dump and there is little we can do about it!  Living in a larger city doesn't help me, but many pristine-looking rural communities are near Superfund toxic waste sites!  The book mentioned an EPA website where you can find all the toxic emitters and Superfund sites where you live. The example given was a poor neighborhood in Buffalo, NY where many people were developing Lupus. Turns out there was a Superfund site from a 1970's zinc and lead smelter - a wide open vacant lot - that had never been cleaned up!  The possibilities will make you furious, and realize that many of our peers are doomed to the same outcome.  Would you beleive 5 of my closest friends have an autoimmune disease, all of them different? Neighbors too.
You may want to ask your doc to test your Vitamin D level - that's seen as a big contributor now. Although some research I read says Lupus patients should not supplement - hence the photosensitivity.
Reagarding SM antibody and my Rheumatoid Factor, I'm going to request a test for Hep C. I don't have risk factors, but many people with it end up with these antibodies, so I want to at least rule it out.
The rash on your face may be the malar rash of Lupus - I had it during the time I had the body rash in 2005. Strange that it never came back.
My allergist said I don't have anti-DNA antibody which is required for Lupus diagnosis, so I guess that's off the list for now.

[Andrea0414]

My B-12 is in the low normal range 223. I was told 211 to 911 is normal. I see my doc tomorrow to have stitch removed from biopsy. Hopefully, we can discuss some of these issues. I dont think he is going to be much help. My rash is is cluster of raised welts. It has gotten so much worse of the last few days. Usually it is only on my upper arms ONLY. But now I have forming on my shoulders and back. My face-nose, cheeks and forehead are also breaking out in a splotchy looking rash.....I think the stress of everything with this is making things worse. Let alone the holidays....stressful enough.
What have you tested positive for as far as autoimmune antibodies? I have only had the 2 test done ANA 1:160 and SMA 1:80. I have read that if you have one autoimmune disease you are likely to have another.
I am wondering what my triggers are. I believe diet is huge. I am not the healthiest eater at times. This is something I really plan on working on.
It is really nice to have this forum and someone to talk to that understands the frustrations of all this.
Thanks!!!!

[Zizle]

BTW, how low is your B-12?  Is your doc going to address it? Pernicious anemia is another autoimmune disease.

[Zizle]

I have a friend with Lupus who only had discoid Lupus for the first 8 years after her diagnosis.  But I recall it looked more like round welts than a rash.  Have you looked at pictures of dermatomyositis? There are some here: https://health.google.com/health/ref/Dermatomyositis. I don't want to scare you, but you mentioned muscle pain too.  Frankly, all autoimmune diseases are variations of the same thing, it's our medical estabishment that breaks them up by specialty (MS- neurologist/ Crohn's- gastro, etc).  Here is a medical student primer about smooth muscle and what is does in your body.  Although the antibody is associated with liver disease, smooth muscle is found around your intestines, your heart, your blood vessels, breasts, etc.  http://www.cytochemistry.net/microanatomy/muscle/smooth_muscle_2001.htm
I've actually wondered whether breastfeeding is elevating the antibodies in my case.  The weaning process apparently causes a strong immune response in the breasts. The rheumy says we'll test that hypothesis and recheck levels after my daughter fully weans.  Doctor's just haven't begun to make those conections yet - it's an imprecise science. My rheumy strongly recommended that I avoid all vaccines and herbs (echinacea, alfalfa etc.) and vitamins (zinc) that have immune boosting properties. The goal is to not create any triggers to aggravate or begin the disease process.

[Andrea0414]

Well, my liver enzymes are all normal. My old Doc agrees with my new Doc that we are probably looking at lupus.......Guess I will have to wait till February and see what the Rheumy says.....

[Andrea0414]

Yes, I am with you. Autoimmune hepatitis is my biggest fear as well. I am scared of disease but scared of the treatments for them as well. I went to my old Dr today. Explained all the testing I have had so far. He admitted to not knowing much about Anti smooth muscle antibody but felt a full metabolic panel would be good to rule out any liver/kidney problems. Hopefully all are normal and I can begin to ease my mind about this.
I got my actual skin biopsy in the mail yesterday. "Rash is probable for Discoid Lupus".

[Zizle]

Hi Andrea,
I'm in a similar situation as you.  I've had high ANA (1:1280) and ASMA/Actin Antibody titers (57), plus rheumatoid factor (27) since 2005, when I developed an itchy post-partum rash over 60% of my body. It disappeared after weaning at one year.  A biopsy showed excess mucin, but was inconclusive for lupus.  I never followed up after the rash cleared, went on to have a normal pregnancy 2 years later, and I'm now 2 years post-partum. I recently had 3 months of chronic diarrhea and digestive upset (I have a 10-yr history of mild IBS-D and lactose intolerance, but this was worse), and got a full battery of tests. The only abnormality was microscopic colitis on the colonoscopy biopsies. All other tests were negative, SED rate was normal, liver and kidney chemistries normal, C-reactive protein normal, no anemia, CBC normal, etc. I've never had fever or joint pains.

The rheumy thinks this could progress to Crohn's or Ulcerative Colitis someday, but the gastro says they are absolutely not related to microscopic colitis or my antibodies.  One of the autoimmune liver diseases is the biggest fear, or MCTD, so they are rechecking my liver enzymes and other chemistry tests every 3-6 months to catch (whatever it is) early.  

I'm now being tested for food allergies (IgG, not the IgE anaphylactic kind). I'm hoping this stays limited to my gut, and that dietary intervention might help.  I'm thinking about consulting a naturopathic doctor. I've stared fish oil and quercetin (natural anti-inflammatories) in hopes of preventing a flare of ???.  I feel like a ticking time-bomb!
My allergist also recommended finding a GOOD rheumy, as many bad ones abound and give conflicting, often wrong explanations. So I suppose that's next.

Unfortunately, many rheumys only want to see you if you are sick so they can prescribe immune suppresant drugs. I want to do anything I can to prevent this and the need for those drugs!

Let us know what you find out.

[karajo]

Not sure if this would show anything, but a simple urinalysis might could detect billiubin in your urine.  The dark urine is a definite sign and Feb. is a long way off.

[Andrea0414]

Thank you for your response. I will have to take a look at "The Lupus Book". I have some upper ubdominal pain but it feels more like heartburn then pain...I have the fatigue and the dark urine.

I am just going to have to discuss this furthur with my doc. I go see the specialist in Feb.

It is very frustrating!!!!!!!

[karajo]

One more thing.  I looked up SMA in "The Lupus Book" by Dr. Wallace.  He noted that people w/ autoimmune hepatitis first notice right upper abdominal ain along with fatigue, nausea, aching and low-grade fevers.  Loss of appetite, light colored stools and dark urine may also be present.  Does any of these symptoms sound familiar?

[karajo]

Hi Andrea and welcome to MedHelp

First of all, the speckled pattern is seen in SLE and numberous other autoimmune diseases as wel as in some healthy individuals who show a LOW amount of antibody.  (yours is NOT low).  

It sounds like you have been doing some researching on your own.  My advice to you is to act like your dr. never brushed you off the first time.  Just go in there and when he starts decideing what test to run, ask him if he would consider doing a liver funcion panel on you.  

Another suggested test is a vit D level.  Many if not all autoimmune patients have a low vit D level.  

I looked up SMA (as I was unfamiliar w/ it)

http://www.labtestsonline.org/understanding/analytes/asma/test.html
Small amounts of SMA may be present, along with AMA, in up to 50% of patients with primary biliary cirrhosis and may be found in other conditions such as infectious mononucleosis and some cancers. F-actin antibodies may be present in about 22% of patients with primary biliary cirrhosis

The presence of SMA, F-actin antibodies, and ANA are highly suggestive of autoimmune hepatitis but not diagnostic. When significant concentrations of both are present and the doctor suspects autoimmune hepatitis, then a liver biopsy may be performed to look for characteristic signs of damage and scarring in the liver tissue.


So it is suggestive, but not diagnostic.  There is not a whole lot of info out there on this test.  But you are doing the right thing by educating yourself.  

Praying for you, keep us posted on how things are going.
~Kara