Morphea with Neurological Manifastations????????

[Amber001]

In Feb. of 2000 I got burned from a tanning bed so bad that it looked as if I had been caned.  The skin on the back of my left upper thigh never got better and it looked like a bruise that never really went away.  I didn’t pay much attention to it until November of that year when it began to spread down my thigh.  I went to the dermatologist and he quickly diagnosed it as Morphea.  He told me that it was related to Scleroderma and would go away on its own without any intervention.  Unfortunately I watch Lifetime frequently and knew exactly what Scleroderma was; I was shocked and scared.  He reassured me that although it’s related it would never turn systemic.  After a couple more visits with him I was convinced that he was no “expert” on the matter and sought out another doctor as the Morphea continued to spread.  

The doctor I now see has treated hundreds of patients with Morphea and has claimed to see some of them turn systemic.  This scares me to death as recently I’ve noticed several odd things going on.  In early February, of this year, I began to have sharp shooting pains originating from my lower back and going down into my legs.  My lower back was horribly sore and it was difficult to sleep at night.  Not only was the shooting pain going on but my muscles were sore in the back and side of my legs.  About two weeks later I noticed a huge visible decrease in the amount of cellulite on the backs of my thighs despite not changing my eating or exercise habits, I attributed this to skin thickening.  At about the same time I began to notice a burning sensation in the backs of my legs.  To date the back of my right leg is still sore.  I’ve also begun to notice that the skin on my upper arms are sore; not horribly sore but just a little sore to the touch.  I’ve also begun to have pains in my ankles and forearms that seem to be in the bone.  My legs, fingers and feet often itch.  And I’m tired, TERRIBLY tired all the time.

Is there any neurologist or dermatologist that can make some sense out of what I'm experiencing?

[Alan Rockoff, MD]

Assuming the diagnosis of morphea is correct, the tanning incident may have drawn your attention to it, but was not the cause.

Morphea is referred to as localized scleroderma, which is most unfortunate, because the localized form has nothing to do with the systemic form.  Repeat: the diseases have nothing to do with each other.  Each has skin thickening (hence the name), but the systemic form is widespread and potentially fatal, while the localized one is of cosmetic significance (you're lucky it's on your leg and not your face), but otherwise utterly lacks the dreadful consequences of the systemic form.  In fact, it usually "burns itself out"--i.e. becomes inactive, just as the first dermatologist said.  I think you may have been too quick to judge him inadequate.  What you saw on Lifetime was almost certainly not what you have.

As to your current expert who "has claimed to see some of them turn systemic," I am skeptical.  But suppose he has--the real question is whether you are one of those cases or whether your symptoms are those of terrified anxiety brought on by worry that you have the systemic variety.  Were I a betting man, I would wager a lot that worry, not systemic scleroderma, is what you have.

My advice: a third opinion.  Find an expert you trust (an academic at a teaching hospital would be suitable.)  Try www.aad.org and look at their Find a Dermatologist, if you need a referral.  

I urge you to clarify this to your own satisfaction as soon as you can.  You are very likely putting yourself through entirely unnecessary mental torture over a condition which is annoying but ultimately trivial.  Find out for sure.

Best.

Dr. Rockoff

[Amber001]

Thank you Dr. Rockoff, I certainly hope that is the case.

[sarahusesthis]

A related discussion, Morphea was started.