Systemic sclerosis diagnosis for hubby after 2 years

[Broseley]

After 2 years of waiting for the NHS, paying out thousands for private consultations and tests, only to be referred back to the NHS and have all the tests done again, hubby finally has a diagnosis after having a nailfold capillaroscopy. Systemic sclerosis. We're now waiting for a follow up appointment with rheumatology. All this time, he's had no treatment except some pills for his facial rash and lumps and some pills for his Reynauds that didn't work . GP thought it was POTS. I thought it was lupus. He has a nodule on one lung but no other internal issues except his usual digestive problems and back pain. He's had these symptoms ever since I met him in 1987, but after his covid jab they got worse to the point that he had to give up work.

Just a pointer for those trying to get a diagnosis. Persistence does pay off - eventually!

[PMRpro Ambassador]

Do hope they can find ways of managing the symptoms - does it affect him badly?

My husband used to diagnose Reynaud's - he said many patients thought the pills were worse than the disease! One lady wanted to move to Australia but other health issues stopped that so she moved from the NE to the south coast. Another moved to Spain (when it was easy to do so). Probably cheaper to invest in the fantastic range of heated clothing you can get now!

[Broseley in reply to PMRpro]

It's not too bad at present, but he does get breathless from going upstairs or bending over. The Raynaud's he's used to - but his fingers go blue at temperatures lower than 20 degrees C. Really cold weather and they go black! I bought him a electric hand warmer from Lakeland which you can charge on USB. He just doesn't go out in the cold - he finds it too painful, even with gloves and the hand warmer. Unfortunately we moved from the south coast up to the north west of England! He's just been prescribed amlodipine by our GP's pharmacist, but is a bit worried about taking them as he has naturally low blood pressure (lucky him in that respect!).

[PMRpro Ambassador in reply to Broseley]

Could have been worse - could have been the NE! I have never been so cold in my life as I was there! Scotland was far better. Going out up there to S'burys and walking down the chiller aisle and my fingers disappeared! I found wind was the worst thing though. Images of my hands were a feature in the wall in Medical Physics at Newcastle for thermographic imaging of Reynauds!

[Broseley in reply to PMRpro]

Yes it's not too bad here on Wirral, it seems to miss the worst of the cold weather. We've been here 4 years and only a sprinkling of snow so far. I think it gets caught by Snowdonia and the Pennines. But it rains a lot, lot more and we don't get so much sunshine.

[Broseley in reply to PMRpro]

PS I've just found the forum for systemic sclerosis on Health Unlocked so I'll post this on there too.