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notgood2016

Could it be?

2 posts in this topic

42 year old male.

 

2 years ago I was completely healthy and very active.

 

Then developed rapidly progressive neuropathy consisting of biopsy positive small fiber neuropathy; paresthesias; my hands and feet and legs constantly falling asleep; sometimes fasciculations. But all nerve conduction studies negative, EMG negative.

 

Developed Raynaud's phenomenon.

 

Developed finger and hand pain.

 

My hands (palms) developed red mottling, and they feel painful and tight, and are often ice cold no matter what.

3 months ago I developed the sudden onset of terrible chest pain, on high dose prevacid I'm getting only modest relief and they are planning to do an esophageal motility study. Separate from that I also have this weird tight stretch feeling from the center of my chest, across my upper chest, across my shoulders, into my forearms, on both sides.

I also developed a number of ligament and tendon problems that have not gotten better.

I have had every test, every exam, scan, LP, you can imagine. I am completely negative for ESR, CRP, full rheumatologist panel all antibodies negative.

I have seen 3 rheumatologists, 3 neurologists, a pulmonologist, cardiologist, chiro, rolfer, masseur, etc.

So: any thoughts or possibilities? Can symptoms continue to evolve and progress for many years before declaring themselves with renal dysfunction, pulmonary or systemic hypertension, skin tightening?

Thank you.

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Hi Notgood2016,

 

Welcome to these forums!

 

I'm sorry to hear that you've had so many disturbing symptoms and can understand how frustrating and worrying it must be for you.

 

Unfortunately autoimmune diseases in general and scleroderma in particular can be very difficult to diagnose, not least because the symptoms are so variable between different people and can relate to many different diseases. I believe the average time to reach a diagnosis for scleroderma is six years, so you can see that it's not a simple process.

 

In answer to your last question, symptoms can continue to evolve and progress for many years, or alternatively, it can stablise and settle down (we have members who've experienced both sides of the spectrum.) We do recommend that our members, if possible, consult a listed scleroderma expert as this complex disease does require specialist knowledge and expertise, which is not always possible with a general rheumatologist, although once scleroderma is diagnosed, then quite often other specialists, such as you've mentioned, are consulted to deal with each symptom as it appears.

 

We do have a wealth of up to date knowledge and information in our medical pages, which I hope you'll find helpful and informative.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

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International Scleroderma Network (ISN)

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