First signs of scleroderma?

Hi there. Im 37 and new to all this. I have hashimotos thyroiditis (diagnosed last September) and now I also have some mitochondrial antibodies showing up for something else in my latest bloods - 1:80 titre - found in things like PBC, SLE or systemic scleroderma.

I have recently been having trouble with my throat - feels plegmy but nothing really there and also Im constantly wanting to clear my throat and I am just aware that theres an odd unconfortable feeling there. I initially put this down to my hashis and it possibly being enlarged (all good on scan - no nodules or enlargement showing) but now with these new blood results Im wondering if its something else related to one of these other diseases? I see that scleroderma has swallowing difficulties and am now really worried I have that.

I saw a gastro specialist yesterday and he has started me on reflux pills (never had reflux in my life). I doubt very very much this is the issue. Im scared witless its one of these other diseases. Im in New Zealand and I really dont have a lot of faith in our doctors with regard to these less known ailments.

Did any of you have trouble with your swallowing or throats first? How long is it before other symptoms start joining the party as well. What do they give you for swallowing issues?? I cant imagine not being able to swallow naturally. The more I worry about it the worse my throat seems to feel as well!

The specialist said there arent really any blood tests for scleroderma and that we would just have to wait and see what ends up rearing its ugly head. He said sometimes people have these things in their bloods but nothing symptom wise eventuates?? Is this true? Do "normal" people wandering around have these antibodies anyway? Im picking that as I already have one auto immune that its safe to assume theres another one brewing. Hes not going to do any follow up bloods for the AMAs as he said theres no point in tracking them as theres little that can be done anyway! He did say scleroderma is an awful disease to manage and that he had his fingers crossed it wasnt that :(

Feeling very worried and depressed about all this. I have three beautiful little kiddies and Ive always been so busy, independent and on the go. I cant imagine suddenly having something that stops me from being me and not being able to lead a happy normal life with my family.

Sorry, long post. Hopefully someone can be bothered reading it! Any advice would be much appreciated. Feeling very isolated and alone over here in NZ!

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10 Replies

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  • I live in Auckland and have had Systemic Sclerosis since I was 22, nearly 50 years!!!! Where are you, perhaps we can talk.

  • Hi, you worry too much and prematurely, but I can understand. I had 2 small childre when I got SS at 39. At 58 I am doing very well, the pulmonary fibrosis is at a standstill. I swim an hour every day.

    The swallowing problems in SS stem from a fibrotic oesophagus, not in the throat, so it is probably related to your thyroid problem. The worst prognosis antybody is ScL 70, I do not have ( Ro and anty-RNA instead) it and that is probably why I am doing so well. I know somebody who had it plus breast cancer and she is doing well as well, so there is no 100% rule here. What you describe does not sound like scleroderma at all. No muscular pains, no weakness, no stiff navy blue fingers, cold extremities, tissue loss in the face, vanishing mouth and beak-like appearance, no hard skin patches, no dilated blood vessels all over face... you sound healthier.

    I am dreaming about going to NZ, what a beautiful country.. enjoy that and worry less, your stress will cause you more trouble than your illness. Big Hug from Spain.

  • erratum: anti-body

  • Thanks Sootie. Im hoping its just something to do with the thyroid. Its very frustrating to not know what symptoms belong to what problem as so many of them can be attributed to any number of illnesses!

    Im pleased you are doing well so many years after being diagnosed. Thats very reassuring for those that have been recently diagnosed. I dont have any symptoms at all that you listed apart from muscle pain which is probably from the hashis and I have always had weird cold hands and feet (bad circ I think) but no discolouring. The docs gave me a list of things to look out for and to go straight back in if I feel something has changed.

    You are right - NZ is a beautiful country - definitely worth visiting :) So many beaches, green grass (well, a bit brownish at the moment as its summer and rather dry!) and beautiful fresh air. But as beautiful as it is Spain and Portugal are on our list of 'to dos' one day :)

    Thanks so much for your reply

  • Hi Sootie1, i am from uk; good advice. I will not this disease stop me from living. God is on the job

  • Hi Lily. I hope God is not on the job, he is quite useless in human and earthly matters. What is better is a good doctor!! I never relied on gods on any kind, not in my darkest hour when I lay on my bed for months thinking I was nearing the end. I hope you will gain trust in human reason, compassion and solidarity,... gods are good-for-nothing.. Best of luck with your treatment!!!

  • Hi Judy.

    Well thats very reassuring that you are in the same country (what are the chances!??) and have obviously been receiving great care 50 years on! I am in Hamilton. Have you found that the doctors know a lot about this? The ones I have seen seem to have minimal info on it, although at this stage they/I dont know what I have so I guess its pointless having in depth conversations on problems I might not have. The advice given was to just try and forget the blood tests for now and start worrying when symptoms of some sort show up. Sounds good in theory but for a born worrier like myself thats going to be a bit tricky to do :) I guess theres probably not a lot to talk about until I know for sure what it is :(

    Would you mind if I contact you personally if it does turn out to be ss? I do feel a LOT better though knowing you are in the same country with this illness. Are you dealing with specialists in Auckland?

  • Yes, you can get in touch with me. I will figure out how to send a personal message on this site then I can let you have my email address. You mention that I have been obviously been getting good care - well no actually it took about 37 years to get a diagnosis so it was too late to try any of the disease modifying meds. However I am doing quite well really considering. Will PM you when I get it sorted.

  • Hi. I'm sorry to hear you are so worried. It's good to see you have had such positive replies & I can join them! I've had scleroderma for 26 years & am glad to report that I'm still very active & enjoying life. Scleroderma is extremely rare & hopefully it will not be the problem. It's always good to have a name to something though & then you know what you are dealing with. There are blood tests for this disease but the antibodies don't always show up, so symptoms are as important. Have you contacted scleroderma.org.nz ? Hope you manage to make contact with judyt. All best wishes.

  • Hello whitestar, hold on. it is a new disease that many people have no understanding about. Just take a deep breath and take a day at a time. Confusion comes in when you try to take on too much at a time. I thought i was alone until my daughter started doing research and found the scleroderma society. You are not alone, yes you are a young woman; sickness and disease is no respect of person, age colour or creed. Surround yourself with your nearest and dearest. And enjoy your life, i have my issues with this disease but i will not let it beat me. Positive thinking and prayer, I will keep you also in my prayer. God bless you. I am here in the uk and its nice to connect with others across the world, its a blessing

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