newly diagnosed and confused

[alison34]

I'm very confused. Was diagnosed by a dermatologist on Tuesday so still waiting to see the rheumatologist. I had a positive ANA test and cutaneous vasculitis.painful joints and a low count on one sort of white blood cells. Reading through things on here though don't seem to have any other symptoms or maybe just not realising them. Have felt tired all the time for years could this always have been there. And can you beleive it that since Tuesday the vasculitis has moved from being just on my legs and lower stomach to my arms now too.
Is all this normal? And what can I expect from the rheumatologist? Am very anxious and not sure that is helping matters?

[Becky1951]

My gosh, you sound just like me. Back in Oct. after a shower I put my robe on and looked down at my legs - they were covered in bumps!! I thought perhaps I was having an allergic reaction to a bug bite or something. I let it go for a week and then decided I better see a doctor as they seemed to be getting worse. I went to our doctor at work. He wasn't sure what it was, but gave me the Medrol dose pack, a pack of steroids that starts out with a lot and tapers down. It did help somewhat, but as I was tapering off the bumps got worse and red spots appeared on my thighs and abdomen and then arms. At this I went to my regular doctor. He thought it looked like vascutlits and I was put on stronger prednisone. He ran an ANA and it was 1:640, pretty high. I was on prednisone for about two months, my legs were a scabby mess. I had a biopsy and it was leukocytoclastic vasculitis. In Feb. my ANA was 1:320 still high, but my vasculitis was healing, it took months for it to heal and I am left with terrible scars on my legs. I finally went to the rheumatologist in Feb. and he took 10 vials of blood, x-rays, and urinalysis (which showed blood and protein in it and then he ordered a 24 hr. urine test) I just went back to him today May 26 since Feb and got the results of all the tests - I have Hashimoto's thyroiditis (autoimmune thyroid) and Sjogren's syndrome. The vasculitis may have been brought on by a dose of bactrim that I took in Feb. for a UTI, sulfa drugs are a no no. Also, I have high protein in my urine and must see a urologist. I, too, have been a tired person for years, it is nothing for me to come home from work and take a three hr. nap!! and then go back to bed two hrs. later. Please let me know what your doctor says about you.

[Becky1951]

I should have said that I took bactrim in Oct. not Feb!!

[raggedyann1]

Alison,

First of all welcome to the site. :hello:

Next lupus is known as the disease of 1000 faces because it affects us all differently.

Lastly the types of people who post on sites like this generally fall into one of 3 categories
1. Not yet diagnosed but possible lupus
2. Newly diagnosed seeking answers and support
3. The sickest of the spectrum of lupus.

You don't see the middle of the road lupus patients here because their disease is under control and they are busy living their lives.
We do have some exceptions and we gladly welcome them as it can put things back in perspective again.

It sounds to me like you have plenty of symptoms and vasculitis is a major symptom. The aching joints and fatigue are the 2 symptoms that almost everybody has.

Please let us know how things go.

Take care,
Karen