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New SSc 53 year old Male.

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#1 GJG



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Posted 07 July 2016 - 08:53 AM

53 year old male, was just diagnosed last month with Systemic Sclerosis.


Had a positive ANA back in April. Went to Rheumatologist and had 2 sets of bloodwork a week apart. Both came back negative ANA BUT positive Scl-70( 2.5 & 2.6).  Raynaud's positive, nail fold capillary test positive,  sclerodactyly in both hands and face. Bad arthritis in hands and feet. Echo,PFT, CT scan all clear at present. Only solitary pulmonary nodule in right lung.  Hands and feet hurt a lot and hands becoming very difficult to use. All this in 3 month period. Miserable !


To top it off, very successful dentist and it appears my clinical days are over. Help!


Any advice?

#2 Joelf


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Posted 08 July 2016 - 08:54 AM



Welcome to these forums!


I'm sorry to hear that you've been newly diagnosed with scleroderma and I can understand how confused and worried you're feeling, particularly as your symptoms seem to have worsened in a short space of time.


We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise and it is important that your symptoms are monitored on a regular basis, in order to check for any internal involvement.


I've included links to our medical pages on Raynaud's  and Musculoskeletal Involvement, which I hope you'll find helpful and informative.


Kind regards,

Jo Frowde
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#3 Shelley Ensz

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Posted 08 July 2016 - 12:29 PM



Welcome to Sclero Forums. I'm sorry you have scleroderma, that it has onset so quickly, and disrupted your life and livelihood so fast.  It is an enormous adjustment to make, in a short period of time, as I'm sure you're realizing.


As Jo suggested, seeing a (real, listed) scleroderma expert is the first thing to do. You'll feel a lot better just having them to answer some of your most critical questions, and to guide your care with state of the art advice. They are typically great at working along with your local rheumatologist. It will also give you access to any clinical trials you might be qualified for.


It's too much to take in all at once. All of us have felt overwhelmed at first by scleroderma, even without any medical training at all. You'll have a tiny bit of advantage, at least being familiar with the terminology.


From the "when life hands you lemons make lemonade, and lemon cookies, and lemon pie" school of thought....Scleroderma can also affect the mouth, so perhaps down the road you could help expand our resources on Scleroderma Dental Involvement. Very few dentists are interested in this realm (because it is so rare) so any documentation or awareness raising you could do on this score would be greatly appreciated! 



Warm Hugs,

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

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