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Hello all. I am Lisa and I had a bit of a scare friday night when I got a phone call from my dermatologist:
August 12th the day i turned 41 my hubby made me an appt for the dermatologist to have a small red dot on my nose checked, they cut it out and sent it off for testing, this is where lupus comes in to play.
The finding suggested a possibility of Lupus Erythematosus an ana should be done with a follow up with a diagnosis.
So this was told me to at 4 pm Friday night, what Lupus whats that, I was scared, confused and alone.
being married 25 years to the love of my life, we were both scared about this.
I was recently diagnosed with a thyorid condition ( hashimotos disease) but its not bad enough to medicate so I am just treating my body the best way possbile, then this comes along.

So we went yesterday monday the 24th to have this ana test done and today the dermatologist office told me lisa you are in the clear its negative.

Well, I had already made an appt with the rheumy so I called there to cancel, the nurse said to me just cause you got a negative ana doesn't mean you dont have lupus!!!
wow she just burst my bubble didnt she, I was happy for umm all of 5 minutes.

I dont want to hide from any disease. I want to know if I have it, just wondering whats next.

should I still go see this Rheumy doc? Was this my hashimotos disease that is also auto immune disease the thing that alerted them when they did the pathology on my skin?

I would love any suggestions you have to give.

a little about me:

Finally after years and years of feeling crummy at times, I find and endo that really digs deeps she found that I am insulin resistant my a1c test came back 6.9 as you can see results below, I was lost at why i was feeling shaky but everytime I mean everytime I checked my meter it was always 102 110, she explained my panceras is working hard to keep it normal range and thats where this insulin resistance is different.
they did a1c for my glucose that was 6.9 the range is 4.0-6.0 so she put me on glumetza 500 once daily and i seem to have lost the shakiness i was getting from the up and down blood sugar.

well then she did thyroid everything she did tsh antibodies , a full panel and my anitbodies came back 122 and my thyroid is midly high. the test for the pituatary glland came back normal.

She said i have hashimotos disease and I am gonna prolly end up being treated

I feel muscle aches, fatigue, exhauston, sluggishness my days are different all the time sometimes I am ok then others worse.
i haev 2 8 inch metal rods in my back from breaking my back and having 3 of my veterbra infused from my hip bone to my back, so i get alot of back pain and just muscle aches.
I was place don permanent disability in 2000.

I am JUST SCARED!!!!!
so my negative ana means nothing I must go through more tests?
which ones? does this ever stop?

Thanks for letting me vent

LIsa

I got a clear from md, heart doc and these are the two things I have to work on thyroid and glucose resistance
 

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It is true that you can be ANA negative and still have lupus; although usually there will be some other definitive positive result (skin biopsy or other positive autoimmune blood tests). Do you feel as if your symptoms go beyond what your already diagnosed conditions cause? How conclusive was the skin biopsy?

In my opinion, these are probably questions best asked to a rheumatologist and I would probably go ahead with the appointment. It's better to go to an appointment and get all the relevant bloodwork done that can diagnose lupus as well as consult with a doctor regarding all your symptoms and past results/symptpoms --- and then with all the relevant information have the expert decide whether it's lupus or not and whether treatment is indicated or not.

You'll have an answer... and nothing will have changed compared to how you are now other than you may get started on some treatment that will help a condition you may already have that needs treatment (& which will hopefully improve your symptoms too).

Good luck and welcome to our site. I hope you'll let us know how it goes in the future as well...
 

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Hello Lisa,

I too would definitely go ahead with your rheumatologist appointment. People can have ANA negative lupus even if it is relatively rare (I'm one of them). A positive skin biopsy does have to be taken seriously and the nurse is quite right to encourage you to keep the appointment.

If you do have lupus you may simply need some light treatment that would give you a whole other quality of life. I agree with Maia that "knowing" what is wrong doesn't change what you feel/who you are... it just gives you an opportunity to have proper treatment and live a better life.

I would also want to be sure that your hashimotos doesn't need treating. Opinions seem to differ between docs and I'd want to be sure I saw a good endocrinologist as hashimotos can make you feel sluggish, tired, achy and totally out of sorts.

I myself have hashimotos, SLE and a polymyositis overlap. The names really don't matter but the treatment and medical recognition makes a huge difference.

Bye for now,
Katharine
 
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