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Adita78 · 07-23-2010, 07:42 AM

Hello All!

I gave in and went to see my dermatologist's office yesterday.
I consider myself lucky that the doc I got was a very nice doc. I usually see a male doc and she was a lady doc. She actually listened to every word I said.
I had to go through ALL of my issues again and she asked about my symptoms in detail. She looked at my skin and I mentioned Vee's biopsy and checking for the lupus subset. It was nice to have another doc care. My rheumy did too but I think he may be leaning too much on that hypermobility syndrome. I hope he takes all of the other symptoms into account the next time I see him.

The derm- She took a while looking at my skin and said the face does not look much like a malar rash, but when she saw my hands, she actually acknowledged that it may be lupus. And she didn't even see them while in a full blown episode like these past two weeks. The open wound was scarring and starting to get better. My skin has been stiffening up a lot as well & fingers get pudgy, as if retaining water. So I mentioned that too. And def the photosensitivity.

She wants to do the biopsies, like I mentioned to her, but wants to wait to see if I have an episode again. I will see her in about 3 weeks for the biopsies if I don't get an episode before.

For the first time!!! One doc that did acknowledge something truly going on that may be of autoimmune nature. Kind of a relief that I'm not going nuts.

I asked her about my hands & feet turning blue & purple. She mentioned Raynaud's. This has been happening with much more frequency lately, which has been worrying me.

So, my Raynaud's question to everyone is...does it happen a lot right after you get out of the shower/bath? As soon as I get out and the cold air hits me, my hands go purple in some spots and white in others. Weird! my toes turn bluish after being exposed to cold air, like A/C at work. I know it is starting to be noticeable because my husband noticed. And he never did before! His reaction was very surprised.

How much should I have to worry about turning blue & purple?

Any experiences with Raynaud's or skin issues in general would be helpful.

Thanks,

ADITA

VeeJ · 07-23-2010, 08:07 AM

Adita, sounds like progress (yay!). I was told biopsies are best done on a fresh new rash, as the rash is "on the rise". So I hope you get a fresh new rash to show off... well... you know how I mean that.

I think Raynaud's can be seen on its own, but also as one sign of APS (antiphospholipid syndrome). Did your rheumie test you for APS? There's a sticky post on it at the top of the thread list.

So keep us posted, OK? Bye for now, warm wishes, Vee

Adita78 · 07-23-2010, 10:44 AM

Hi Vee! Thanks for responding!

I kind of wish I'd get an episode so they can biopsy the site and get accurate results but she said she will do it next time with or without a skin episode.

Getting diagnosed is truly a hit-and-miss, it feels like, or which doc sympathizes, because if you don't present the symptoms at the time of your appointment, it's like they hold out on you. Very unfair. You hope and pray they will believe you when you rattle off the many things that are happening.

I read up on APS and I'm a bit nervous because this was not one of the tests the Rheum. sent out for....unless it is included in the quantitative immunoglobulin test. Does anyone know? I've looked it up some and found that it does test for IgA but not sure if it is specifically for AP antibodies. So, I'm confused. I've suffered about 2 of the symptoms on the list. I left a message with their office asking for him to consider adding the APA blood test as well. Hopefully I'll hear back on Monday.

This is exhausting. You have to really take charge and ask or push to get tests done because they won't research for you. Only YOU know your symptoms. Just last night I woke up out of nowhere and had a cold feeling in my back, queasy/nauseaous, and felt disoriented. Not sure if my blood sugar was low, if my heart was having the quirky tachycardias and anxious spells, or WHAT?!? But it was something.

So, you keep accumulating symptoms and play this sort of waiting game.
It's frustrating! I start to doubt and wonder if it's all in my head. Back to the vicious cycle. UGH!

I feel like I'm running here and there and more blood work and back to the same places. How do I stay sane???

Mel52 · 07-23-2010, 09:36 PM

Hi I have reynaud's. My hands tend to turn blue and sometimes black if I get cold. A ceiling fan makes my skin hurt and it can trigger it also. My nose too. I forgot to tell a surgeon I had reynauds and after surgery (wrist surgery) my hand turned black. They called the dr out of his next operation to look at it. I was just conscious enough to tell him I have reynauds. He was very relieved. I keep gloves in my car and if I have an episode I run hot water over my hands. My feet get cold but they don't change colors.
After a shower, I get red all over and very weak. Supposedly I don't have an autoimmune disease according to my new rheumotologist. (smirk)

Adita78 · 07-26-2010, 07:59 AM

Hi Mel52!

I've been wondering how bad it can get.

I get cold for anything as it is. So, my nails have two weird shades. There's white and then blue/purple. My toes turn purplish. The same with the palms of my hands.

Its been happening with more frequency. I don't know what will happen when winter gets here. Glad I'm in FL. Geez!

It scares me to see them like that. And warm water helps a lot.
Today it is freezing here at work. So, I'm suffering. My joint pains don't help, so this cold temp is really working on me. Don't know what to do right about now.

That's weird. I get weak too after coming out of the shower. which one? Warm or cool water?

I'm into very warm water. I always wondered if it was relaxing me too much but it's not a good feeling. It's more of a debilitating feeling! Like when I'm outside in the sun and the photosensitivity kicks in, but when I use cooler water, it's like my body cringes. I don't get it.

Adita78 · 07-26-2010, 08:08 AM

Hi Vee & Everyone!

Happy Monday!

The Rheum's office called me very early this morning to tell me that the Rheumatologist does want me to test for the AP antibodies. I was so happy & relieved!

Wow! He honored my request! How NICE of him!

I'll be picking up the paperwork to get the antiphospholipid antibodies test script. I guess it all works out because I didn't know I had to be fasting for the ANCA test. I made a lab apptmt for this Thursday.

Hopefully this week I will hear about the other tests (C3 & C4, ANA, Sed Rate, Ig's, CRP, CPK, aldolase, etc...).

Hope everyone is feeling good today!
Have a great day!

ADITA

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