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Numerous Patches In Morphea Patients


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#1 Bunky

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Posted 30 May 2007 - 08:30 AM

Hello all,
I saw a new rheumatologist dr. yesterday who told me that morphea only ever presents as one patch, never spreads, and that since I had numerous patches it couldn't be morphea, although I already had a diagnosis of morphea from a dermatologist (one of the rheumatologist's colleagues) via clinical exam and skin biopsy.
What??? I've only read one story of a morphea patient that had one patch, all the others had many patches.

They didn't look at any of the medical records I brought with me, and I was examined by a resident that had never heard of morphea. After the exam, the resident consulted with the rheumatologist in a different room and then brought him in to tell me that although I have raynaud's, telangiactasia, (both of which he diagnosed me with yesterday), GERD, fibromyalgia, intestinal issues, shortness of breath, IC, and can't open my fingers all the way, "There is no evidence of any autoimmune issue, and therefore no need for a rheumatologist."

Needless to say, I am very confused. Anybody have any insight?

#2 jefa

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Posted 30 May 2007 - 08:41 AM

Hi, Bunky. You have every right to be confused--and to seek another opinion. Perhaps you should be seeing a scleroderma specialist instead of a rheumatologist (and his cohort dermatologist). In spite of your negative ANA (I went back and read your other posts again), your positive skin biopsy and other clinical symptoms should be enough to get you in to see one.

This link should help you in Finding a Scleroderma Expert.


Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Sweet

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Posted 30 May 2007 - 09:07 AM

Wow,

My insight would be to find another rheumatologist. Sounds like this person just doesn't have enough knowledge of the disease. Oh I was just going to give you the link to find a slcero expert, but see Carrie already did. I really think that is your best bet.

I'm sorry you are having to deal with this right now. It's all so frustrating at times, but please forge forward until you find a doctor you can relate with, and feel he/she has a grip on this disease.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 janey

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Posted 30 May 2007 - 09:09 AM

Bunky,
Yeh - I think I would be confused as well. With all your obvious symptoms, to just do a blanket write off of any and all autoimmune diseases sounds pretty strange. Please check out the link that Carrie provided and see if you can find a specialist in your area. It certainly sounds like the best route for you right now.

BTW - we have several members of this forum that have been diagnosed with scleroderma and other autoimmune diseases even though they have a negative ANA. ANA is an indicator, not a diagnosis.

Sorry about your frustration. But please don't give up until you have some satisfactory answers.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#5 Bunky

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Posted 30 May 2007 - 03:16 PM

Thank you all for responding and your support.
My regular doctor and family all agree that I should stick with the original diagnosis, forget yesterday ever happened, and go on from there.
Thanks for sending the links!
-Beth