[tidejah]

Hi,

For the past month I have had these spots on my lower legs and ankles they look like blood spots and sometimes look scabbed but do not bleed. They hurt, they burn, they itch and about the time I think they might heal they pop out again with more. I was diagnosed with discoid lupus in 96 and had active flares for about 4 years, went into remission as they say, and nothing til about a month ago now. I have a Doctor that I think she thinks I am crazy and not willing to treat only symptomatically and I really have no choice because finacially and local she is all I have. I do have a appointment with Dermie in a few days now to have him look. My doctor don't know what it is she thought it looked like I had chigers of all things, and incinuated I didn't know what chigers were I assured her that I did. I went to and ER doctor where I told her that I had Lupus and she said I think your lupus has gone systemic and I think these spots are from vascularitus she said what she thinks is that lupus is back and is causing blood vessels to explode, I don't know why just in my lower legs mainly around my ankles. I have noticed I was getting more fatigued than usual and a little stiffer again, but I thought it was that summer is coming on and we all know things are a little more difficult in the summer or at least for me. Anyone out there ever heard of such a thing with Lupus or anyhting else? I will be very interested to hear your take on this thing. I did have blood test done ANA was neg but Sed rate was up and the hematocrit was off that seemed to be it, all though she did not run any other test only a regular CBC Sed rate DNA antibodies Smooth muscle antib

Thanks for your input,

Denise

 

[Maia]

Vasculitis often shows up on the lower legs as red spots, so that is certainly a possibility in your case. I hope you can get into your follow up doctor appointment soon, because vasculitis is something that really needs to be investigated quickly & treated appropriately as well.

Do you have a rheumatologist involved in your care - or just a GP? I am guessing it was your GP that thinks you had chiggers and that caused your ankle spots? If at all possible, even if you have to travel a distance, I would recommend going to a rheumy with this new turn of events and getting a more knowledgeable and thorough examination.

 

[setApart]

I have those spots but they are very tiny and are here and there all over my body they are called petechiae(sp?) I also have livedo reticularis it's a rash on my lower back and legs that looks lacy looking and never goes away. The red dots never go away either, I showed them to my rheumie but she never mentioned anything else about them. Mine do not itch.

 

[Lily]

Hi there,

I'm with Maia on this, I think it's time for a re-evaluation given your new symptoms. I also think that Cutaneous Vasculitis is a definite possibility from what your describe.

love
Lily

 

[tidejah]

Well I have a dermie appointment tomorrow, I am wondering if I need a dermatologist or a rhuematologist, I am paying out of pocket and I want to go the best one for me. The GP said I show no signs of rheumatoid and she said ANA's are neg but as I said the sed rate was way off and the hematocrit was off, I notice today these spots are moving up my legs, but are fewer than around my ankles. Yes it was the GP that said she thought chigers, she thinks I am crazy for having the symptoms I do, she does not want to treat for Lupus, she said I have no signs of Lupus I got kind of upset and told her that was not the question whether I had Lupus or not I had the biopsy in 96 and the rings and spots to prove that then she finally said well we will see what the dermatologist has to say and go from there. I have been so frustrated with this Doctor anyway, I wiah I knew where to go for the specialist. Is the rhuemie the specialist to treat lupus or is there another? know as long as I have had this I am kind of dumb about it, or so it would seem. I will report more tomorrow or the next day on what the dermie says

Thanks you all,

Denise

 

[Lily]

Hi Denise,

See what the Dermie has to say about these spots, they should be able to diagnose cutaneous vasculitis. It's a good idea to have tests run though, especially ANA and ANCA (more specific to some types of Vasculitis).

Good luck and let us know how you get along. If you don't get anywhere then a Rheumy is definitely the one to see. They would be familiar with all the Immune tests they should be running given your symptoms. Most have at least some training in Immunological testing.

love
Lily

 

[setApart]

Well I have a dermie appointment tomorrow, I am wondering if I need a dermatologist or a rhuematologist, I am paying out of pocket and I want to go the best one for me. The GP said I show no signs of rheumatoid and she said ANA's are neg but as I said the sed rate was way off and the hematocrit was off, I notice today these spots are moving up my legs, but are fewer than around my ankles. Yes it was the GP that said she thought chigers, she thinks I am crazy for having the symptoms I do, she does not want to treat for Lupus, she said I have no signs of Lupus I got kind of upset and told her that was not the question whether I had Lupus or not I had the biopsy in 96 and the rings and spots to prove that then she finally said well we will see what the dermatologist has to say and go from there. I have been so frustrated with this Doctor anyway, I wiah I knew where to go for the specialist. Is the rhuemie the specialist to treat lupus or is there another? know as long as I have had this I am kind of dumb about it, or so it would seem. I will report more tomorrow or the next day on what the dermie says

Thanks you all,

Denise

Hi Denise,

I noticed your from Oklahoma I am too. Yes a Rheumatologist is the one who treats lupus. I've seen a few before finally finding one who would diagnose and tx me, she with OMRF(Okla. Med. Research Found.) You might give them a call and see if you can get an appt. Good luck.

 

[mysharonna]

Hi Denise,

It sounds like some type of vasculitis to me too, especially the way it started on the lower legs and is beginning to travel. I hope your dermy can sort this out for you and you can get some treatment.

I think a rheumatologist consultation is definitely in order.

Good luck, let us know how you do!
Sharon

 

[tidejah]

Hello to you all,

Okay i went to the dermie and he said it looked like vasculitus to him he did a punch biopsy and the results should be in a few days. I am anxious to get this figured out, just as summer starts everyone of course is whoa what happened? My guy said tell them you stepped in a snake pit, I just have a hard time explaining it to everyone and I just don't like it. I understand natural curiosity, but goodness!!! Leaving for IDAHO tomorrow be gone for two weeks, can't wait i have never been out that way I am by default from Arkansas and moved to Oklahoma a couple years back. Hope you all are doing good, I'll try to check in I hope somewhere along the way someone has a computer!! I am haveing a hard time figureing this message board out and what i am supposed to do and them I can't remember where I posted to see any replies, I guess I am a slow learner, I'll get it eventually.


Denise

 

[Lily]

Hi Denise,

That is a good start and I hope that this helps sort things out for you.

If you want to find any previous posts you have done then just click on your own name and you will see the option to find all of your posts. It will take you to the thread where you can read everyone's replies.

Enjoy your break and let us know what the results of the biopsy are.

love
Lily

 

[tidejah]

Hello to everyone we are still traveling we are in West yellowStone Montana having a good time. I did get the results of the biospy and it is vasculitus I am still on the road and having a few flares with them and at one stage of the little ******s they drive me crazy itching but that only last a day or two I notice they sm to be getting bigger in size any suggestions for over the counter treatment til i get home. I am using Aveno anti itch but they are so ugly and everyone seems so leary of me when I have shot pants on if I wear long pants they irritate the spots Oh well i am off to see how this day goes talk to you again soon

Denise

 

[Maia]

Glad to hear you have an answer for this problem at least, now it really is important to get back in to that rheumy though. Is nothing being done to treat the vasculitis at this point then?

 

[tbunny1]

hey tidejah,

glad to hear you are at least enjoying yourself! I seem to get vasculitis every time I go on vacation. I think it is because I am on my feet and walking more than usual.

I'm surprised youre getting around so well - most docs say to elevate those tootsies and rest up. Be carefull, and take care of yourself.