Raynaud Disease Support Group

I have had attacks of vasoconstriction and when I get them,my limbs won't hardly function and I walk like Frankenstein.Does this affect you in the same way?I don't have to drink coffee for this to happen to me.I may be overtired or under some stress whenever it happens.The first time I was diagnosed,the doctor had me to pull my socks off and let my feet dangle and whenever she came in,my feed were the color of grape suckers.I knew my hands would turn like this but not my feet until then.My hubby was in the exam room with me when he say it,he knew it must be Scleroderma.They did the ANA test on me and it was confirmed.

Post edited by: dudleydoo, at: 01/20/2010 07:54 PM

I have sky-high anticentromere antibodies, which can cause CREST/scleroderma. I've been classified as having "undifferentiated connective tissue disease with features of scleroderma" basically because I don't yet have any skin hardening. I have the attacks of Raynaud's in my feet just as you describe. Did your ANA pattern have the anti-nucleolar or the anti-centromere pattern? And did they follow that up with the anti-SCL and anti-centromere b tests?

Yes, there have been several times when I woke up in the morning and was clumping around like Frankenstein's monster. That's the only way I can describe it. I also found that when I went to go down to the basement, the descent was very jerky, like somehow my muscles or tendons were involved. At the same time I noticed weakness in my "getting up" muscles. It was especially hard rising out of low car seats - I found myself hanging onto the car door and pulling myself out of the car with my arms. At first I thought I must be getting MS, but the brain scans were negative. The episodes don't last long, fortunately, and I haven't had one lately, thankfully.

But I am getting other effects from these anticentromere antibodies. Most recently my scleroderma doc ordered a cardioechogram and it determined that my heart muscle is stiffening, so that I am in stage 2 diastolc heart dysfunction. Not good! I am supposed to have further testing of the heart in February.

You are the first person I have talked to that has both the diagnosis of scleroderma and has mentioned "the Frankenstein walk." I'm glad to know I'm not crazy! Thanks!

If you are starting to huff and puff with walking or mild exertion like I do, you need to get to a scleroderma specialist and let him order a cardioechogram. It checks for both heart dysfunction and pulmonary arterial hypertension, both of which are common in this disease.

The scleroderma forum is growing fast now. We're now up to 34 members. Do join our discussions there.

Hallie