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Marion66

Scared.

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Hi all. I've been feeling unwell for a number of years and have had loads of tests done. I had shortness of breath for 3 years and no one took me seriously until my HRCT scan revealed bronchiectasis, partial collapse, swollen lymph nodes, ground glass shadows and tree-in-bud changes. I have another HRCT in May to check progression. 

 

As well as shortness of breath I've had sore joints and muscles and overwhelming fatigue. They have ruled out RA. I have red fingertips which are very painful when I touch anything cold, even just cold tap water. I have swollen puffy fingers and shiny palms. I have sore toes and my feet feel bigger. I have reported all of this to my rheumatologist. 

 

This past few weeks I've woken up every day with my fingers locked in a bent position. Two years ago I noticed skin on my arms and legs very simply like cellulite. I thought it was just aging. My legs and arms have felt tight and my ankles and wrists are also swollen. 

 

I'm trying so hard to get answers to what's wrong with me and now think I have systemic sclerosis. Things are starting to fall into place for me. I have a rash on my face and neck which I've had for a few years but no one noticed it as I always wore make up but when I look at it it does look like telangliectasis. 

 

I'm considering going privately to a dermatologist to get his opinion before I go back to my rheumatologist. I'm a bit overweight and I feel they put everything down to that but they were very wrong about the shortness of breath.

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Hi Marion,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with so many unpleasant and worrying symptoms. On the face of it, it's possible that these symptoms could relate to scleroderma; however they may also be caused by something totally unrelated. Please note that I have no medical training and so therefore it's not possible for me to hazard a guess as to the nature of your illness, or the reason you're experiencing the symptoms you describe. Unfortunately, scleroderma is notoriously difficult to diagnose, not least because it can mimic other diseases and affects everyone differently.

 

We do recommend that our members, if possible, consult a listed scleroderma expert/dermatologist, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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