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Is it scleroderma - negative tests

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#1 smanda


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Posted 11 June 2008 - 02:50 AM

Hi everyone. I'm a bit at wits end wondering what I've got.

My story is this ... 5 years ago my hands and feet burnt/tingled and became swollen. The skin then peeled. 2 weeks later I had an episode of full body tingling for 12 hours or so. Then came numerous other symptoms; numb patch on leg, tingling in feet/hands. Numbness at night in arms/legs; electric shocks sensations. The odd rash that came and went. My hair was particularly dry at this time for several months.
Since then I have had two more pregnancies/babies and have felt more or less ok with seemingly no connected symptoms for 2 years; apart from the odd spell of vertigo (not lightheadness); dry hair and rashes.
8 months ago I began getting severe shooting pains in my head along with sore throat; and the skin on my face would be very red and sore to touch (like sunburn). The head pains/headache was ongoing for three months. The facial reddening lasted on and off for 5 months.
In March this year, my big toes went numb and are still numb. My hands then started to burn again and swell a bit again and I started to feel odd. My fingernails/toenails and fingertips became very tender again for days on end but no real pain. There has been numerous other symptoms of course, but too many to mention. Recently I have had a couple of spells of Raynaud's on my toes with complete blanching in areas. The whole soles of my feet are regularly a dusky blue and I have pains across my chest and neck area for several weeks. My energy levels are on the whole normal.

My question is this: 5 years ago I had all the blood tests required to discount autoimmune disorders ie, ANA, ENA, ANCA, plus blood counts, ESR etc. I believe I had a chest x-ray; heart echo and MRI on my head. I was also examined by 2 rheumatologists who couldn't find anything wrong. 3 years ago I had repeat negative ANA, plus neg ESR. I have had several ESR's over the years, all normal.
I have 4 weeks ago had another round of tests; ANA, ENA, antiphosophilipid, anticardiolipin, ESR, C-reative protein, thyroid, RF, immunoglobins, anti-smooth muscles and anti-gastric parietal cell antibodies, full blood count incl haemoglobin. Absolutely everything has been normal apart from platelets which are always about 142 (normal range 150-45 0) and have been for the last 5 years.
Given the new arrival of Raynaud's I am concerned I could have scleroderma; is this likely given the length of time from the arrival of first symtpoms (which were severe enough to suggest serious disease) and all negative blood tests?

#2 Shelley Ensz

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Posted 11 June 2008 - 03:29 AM

Dear Smanda,

Welcome to Sclero Forums but I'm sorry it is because of the symptoms you are experiencing. None of us are doctors, of course, so it is impossible for us to tell whether any particular symptom may or may not be due to scleroderma.

Perhaps the only comment I can make is that this does not sound like a typical constellation or progression of symptoms, especially over this length of time, and/or there are things that would be outside the realm of scleroderma.

Since you have a lot of numbness/tingling/flushing, I'd tend to think of going to a neurologist first. Plus a dermatologist for the rashes; they can be very helpful by diagnosing or excluding many skin diseases, such as dermatitis, rosacea, lupus, dermatomyositis, scleroderma, etc.

It is not typical, for example, for scleroderma to cause things like peeling skin or severe shooting pains in the head, rashes, chest and neck pains, or dry hair. So I would tend to think that something else might be going on; and I would also check for all medication side effects, too.

I'm sorry we really don't or can't diagnose you (or anyone) nor even necessarily point you in the right direction. But you really need to be consulting medical professionals and a good neurologist might be a nice place to start as they can pin down (rather literally) things like numbness and get you on the right road for diagnosis.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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#3 smanda


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Posted 11 June 2008 - 05:44 AM

Thank you very much for your response.

I did actually see a couple of neurologists 5 years ago and had a MRI scan and nerve conduction tests which were all good.

At the moment I don't really have any too troublesome symptoms so I'll just wait and see what (if anything) happens next.

Thanks again for your time and support.