Systemic sclerosis - if internal organs effected, what symptoms would I have?

[-missymoo]

Hi all (me again)

Just wondering, if internal organs have or are effected by Ssc, what symptoms would I have apart from acid reflux?

Thanks in advance

MM x

[charlieab]

Hi missymoo

Im no expert but I think that if you have been diagnosed with SSc then they should as a matter of course be testing your main organs, such as with PFT for lungs and echocardiogram. These tests should reveal any problem i think.

Ive recently been diagnosed with two autoimmune conditions and scleroderma is being looked at as a possible third. Just had polymerase III blood test. But I know that I have started imagining (or possibly imagining) all kinds of symptoms. Just dont know to what extent its anxiety.

It maybe that you dont have any internal organ involvement other than GI and may not for decades if ever. It can vary widely I think.

best wishes

[-missymoo in reply to charlieab]

Hi there and thanks.

I'm awaiting an echocardiogram and lung function test to check for severity. I've had severe Raynauds for around 10 years now progressively getting worse and I suppose what worries me is my skin is totally uneffected apart from the odd broken blood vessels on my face which makes me think it may have effected me internally? But wondered if I'd have symptoms if it had?!?! I have so many unanswered questions 😫. Today I went for my routine eye test which revealed I have very narrow drains and high eye pressure which will require a laser procedure to widen the drains to prevent potential loss of vision. Now I worry this could all be connected. I understand no one can give me answers, just the waiting for further tests is frustrating.

Thanks again for your reply and I wish you all the best with treatment etc. X

[Hidden]

Try not to worry too much - Scleroderma is a system-wide condition but that doesn't mean an effect on your body other than skin (internal) means it is affecting all or other internal. Heart and lung function is tested early to benchmark your organs to give a baseline of your own to best monitor any change in the future (as well as spot any existing change if there is any). Stress is a known trigger/antagonist of scleroderma so try to relax and get through it one day at a time rather than worrying too much on everything at once. I had benchmark lung and heart tests done and then repeated a couple of years later and had gone from totally normal to athlete-level! At the start it's overwhelming with lots of tests but things settle down. I shouldn't worry about trying to second guess symptoms - they're testing anyway - sit back and let them run all their tests then see what's what I hope that's helpful to you x

[LucyJean]

Hello there, I would encourage you to look on the SRUK website for more information about Scleroderma as there are some helpful leaflets on there which talk about some of the symptoms and management.

The most likely organs that are affected are the lungs, heart and kidneys. It depends on the type of scleroderma that you have as to how they are affected, and the pattern varies dramatically in severity from person to person. Just because you have scleroderma does not mean you will automatically get all of these problems, or that it is a slippery slope.

If you had problems with your lungs the likelihood is you would notice shortness of breath on exertion. Equally the issues with the heart would be noticeable by shortness of breath and difficulty with exercise. Kidneys would mainly be picked up through high blood pressure and blood in your urine.

Please don't be worrying yourself. Routine Rheumatology or GP checks usually include lung function tests and ECGs and ECHOs for the heart, as well as urine dip stick and Blood pressure monitoring.

Hope that helps

Lucy xxx

[cowhide]

Good advice given. Don't go looking for problems that may never be there! As long as you are being monitored you are in a better place than most of the general public - we have the benefit of regular heart and lung checks as well as our blood and urine being kept an eye on for diabetes etc . Take care.

[marilynmcl]

hi, thing is, if you can breathe easily then no worries on lung function....they will probably monitor this as a matter of routine. If you have ease of movement on exertion..exercise ...and again have no problem getting your breath back quickly and no heart palpitations then no worries on that too. I have Ssc. too but it has affected my lungs and I am not too good on this as it was diagnosed after the damage had been done as my doctors did not know what was wrong with me ...I went from a size 16 down to a 12 dress size in a short period of time...I ended up in hospital on a drip with two bouts of pneumonia and it was after the second bout that I was diagnosed with Ssc. by a consultant who knew what to look for in this disease. My joints have been affected also..swelling of my fingers and pain in my arms and legs ...might be down to the Ssc. or my existing osteoarthritis may be causing this but never had it so bad....also my vertebrae has been xrayed and my spine is bending and the pain is pretty bad most of the time....again, not sure if this is down to Ssc. who knows?!

Anyway, as I wrote at the beginning of this...if you feel okay most of the time and just the Raynauds is the problem then stop worrying. The docs will keep an eye on you I am sure. Best wishes going forward for you pet.x

[kimmo]

Hello, just noticed your post. I've read the replies and agree with what has been said. I've had scleroderma for over 25 years and it diffused, diagnosed from regular blood tests, in 2009. I felt bloated under my upper ribs for a few months but put that down to food intolerances. I was going to the loo ok. Was sick once in 12 months. In May 2010 collapsed at home after being sick and remember nothing until 5 days later when I was taken off life support. Scleroderma had masked the internal damage and no CT or MRI scan picked up I had a necrotised colon and large intestine. I was one of the lucky ones. I hope this hasn't frightened you but if anyone reading this gets the bloated feeling, or constipation, perhaps it would advisable to seek medical advice?