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Amanda Thorpe

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Posts posted by Amanda Thorpe


  1. Hello Boomerangst

     

    Welcome and although I am not medically trained I feel sure that stress does not cause dents in the skin, it might make a disease worse, it might cause hair loss but dents in the skin? Permanent dents? 

     

    I don't know what you have nor can I say for sure but I wonder if you have en coup de sabre, a type of linear scleroderma, Have you thought about getting referred to the Royal Free because they are scleroderma specialists and even if they say you do not have scleroderma at least you'll know.

     

    Take care and keep posting.


  2. Hello Alice

     

    I have a very dear friend who has a digestive tract that doesn't work and is fed via a port in her chest into her heart. Her system neither absorbs food or moves it along. For her the vomiting and nausea is the worst.

     

    Have a read of our blog by CFM Babs who is fed into her stomach thus avoiding her esophagus. I think the benefits make it worthwhile for her and as extreme as this sort of thing may be it does bring benefits.

     

    Speak to your gastroenterologist to see what can be done to help your symptoms and it might mean radical interventions but this can actually improve your quality of life in the long run.

     

    Take care.


  3. Hello Honeybee

     

    Although I live in the UK I spent 10 years in Illinois and Texas, there's no way you can function without a car, distance is just too far and that's any distance neither is their public transport everywhere. Please bear in mind I base this on having been in the US many years ago but I remember Ma learning how to drive for these reasons.

     

    I guess it's possible to adapt anywhere but do you want to?

     

    Take care and keep posting.


  4. Hello Thoughtpets

     

    Welcome to the forums.

     

    In addition to the information you have already been given you might find interesting our articles about   aspiration  which is...pus in the lungs...and is very serious.

     

    Autoimmune diseases are diseases in which the immune system is overactive rather than under active and that being the case, scleroderma does not automatically make us prone to illness or infection, however, any immunosuppressant medication can.

     

    Shelley makes a good point, they feed all dogs dog food a strange thing to say I know but basically there's no treatment especially for scleroderma so there's nothing to gain by naming it. An autoimmune disease is an autoimmune disease with all receiving the same treatment. Now as a patient I understand the need for a specific diagnosis as will most patients but the medical establishment can be another thing!

     

    I hope this helps and take care.


  5. Hello Evelyn

     

    Welcome to the forums! I was on mycophenolate and found it helpful, well I think I did as I am sure it helped some of my skin soften. Mind you as this disease can wax and wane you never know if it's medication or disease progression, or in this case, lack of. It's a well used drug in systemic scleroderma particularly if there is lung involvement.

     

    I suppose you can but try it and always stop if you don't like it but do let us know what you decide.

     

    Take care.


  6. Hello Greypilgrim

     

    Don't be surprised if your skin irritates when wet, mine still does, it's a dryness issue. Wash with emollients just be careful not to slip.

     

    Any tight skin is easily irritated and can cause underlying neuropathy. I still have irritated skin and now serious neuropathy. I take pregabalin and recently tried to cut it down because of weight issues, I was shocked by the fierce pins and needles sensation I experienced and upped the dose again. No way could I live with it, I would rather have the weight!

     

    I hope this helps and take care.


  7. Hello Greypilgrim

     

    Don't be surprised if your skin irritates when wet, mine still does, it's a dryness issue. Wash with emollients just be careful not to slip.

     

    Any tight skin is easily irritated and can cause underlying neuropathy. I still have irritated skin and now serious neuropathy. I take pregabalin and recently tried to cut it down because of weight issues, I was shocked by the fierce pins and needles sensation I experienced and upped the dose again. No way could I live with it, I would rather have the weight!

     

    I hope this helps and take care.


  8. Hello Chip

     

    At the point of diagnosis I had about 60-70% tight skin. I had no movement in the joints in my toes, ankle, wrists and fingers. In my elbows, knees and shoulders I had some movement but, like your husband, could not lift my arms about my head, neither could I straighten out my arms. Only my hips were unaffected!

     

    Thanks to mycophenolate (I think!) I had skin loosening and now I have tight skin from the knee down and from halfway down the forearm. It means that I have sclerodactyly (it's my hands in the video) restricted movement of the wrist joint. I have limited movement of the ankle joint and toe joints, the skin on my calves is tight, shiny and hairless. After 7 years of tight skin I have neuropathy and foot ulcers where the skin is tight, who knows whether it will ever loosen.

     

    As Jo has suggested, referral to a scleroderma expert could be beneficial, I don't know if your husband could take any sort of immunosuppressants now but that's what's used to reverse the effects to the skin. Mind you, scleroderma can wax and wane so it is possible that it could soften with time, 7 years on and I'm still waiting for reversal of my remaining areas of tight skin. 

     

    It there's one thing I know about scleroderma, it's that anything is possible and if there's one thing I know about people with scleroderma, it's that we're capable of anything as are our relatives!

     

    Take care.


  9. Hello Eoinok

     

    From your other posts you have been diagnosed with en coup de sabre, a type of localised scleroderma. As it happens "A 2003 large multinational study found that 25% of localized patients had at least one other manifestation, such as osteoarticular (affecting the bones and joints), neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of the morphea patients had more than two non-cutaneous (non-skin) manifestations, and none of the patients in the study developed systemic scleroderma during the follow-up." It's possible to have localised scleroderma and a symptom or two of systemic scleroderma but at least your life expectancy isn't affected!

     

    Take care.


  10. Hello Sara

     

    Well, if nothing else, a second opinion will put your mind at rest. As we know a positive ANA does not mean scleroderma and there are many things that can cause gastric issues, I am not sure what yours are but not everyone with reflux has scleroderma. I am guessing a nailfold capilleroscopy was not carried out because no other symptoms suggested scleroderma.

     

    Mind you, I can but guess, as suggested make your second opinion that of a scleroderma expert, then you'll know for sure.

     

    Take care.


  11. Quiltfairy, anything that gets the word out about scleroderma and the ISN is a good thing in my book! If it gets taken up by your local news organisation please let us know. Thanks for this!

     

    Isolation was one of the most difficult emotions I had at diagnosis and being told your disease is really, really rare compounds this. The more people know about scleroderma the less rare it is and the less the sense of isolation for the newly diagnosed, hopefully anyway.


  12. Hello Satya

     

    Welcome to the forums, I have sent a reply to your email enquiry which I hope you find useful. Jo has certainly given you some great links and advice. She can speak from experience when it comes to lung fibrosis.

     

    The thing about scleroderma is that many a time it seems like the disease is going to succeed but people succeed instead! I know of a number of people, including myself, who have nearly been killed off by scleroderma but in fact recover. I certainly have seen that anything is possible.

     

    Take care and keep posting.


  13. Hello Sara

     

    Shelley's right, it might not be scleroderma but until you know every little twinge is going to be a new symptom whether it really is or not. See an expert, now. Or when they give you an appointment.

     

    You might find our emotional adjustment resources helpful, they have been written and presented by people with scleroderma who have been where you "think" you are. I'll say "think" until we know for sure!

     

    Take care.


  14. Hello Sara

     

    Welcome and firstly let me say that even if you do have scleroderma (I can't say either way) it is not an automatic redline to the morgue. I have had diffuse systemic scleroderma for 7 years now having initially been given at least 10 years at diagnosis. Sure, some people do die quickly, some after 10, 20, 30 years and, as it happens, most people find learning how to live with the disease its biggest challenge.

     

    The answer to your question is, yes! Yes, it is possible to have a positive blood test but never actually develop scleroderma. Yes it is possible to have scleroderma without any actual skin involvement, scleroderma sine scleroderma or scleroderma sans scleroderma are exactly that. Have a look at sans because it says that Raynaud's and ANA may not be present and that the gastrointestinal tract can be involved.

     

    I suspect that you may be on the cusp of many possibilities, sorry but there it is. The most important thing you can do for you and your family is to be treated by a scleroderma expert. As you have seen from my answer, scleroderma is a very complex and multifaceted disease, almost anything is possible so you really need to be under the care of someone who knows this.

     

    Take care and keep posting.


  15. Hello Beth

     

    Welcome and I echo Jo, hives is not a symptom of scleroderma and blood work positive for scleroderma does not mean you have the disease, just the antibody. Anyways, if you already have a bunch of autoimmune diseases and did have scleroderma you would not get the full disease but just a sample of it.

     

    Please let us know what your rheumatologist says and keep posting.

     

    Take care.


  16. Hello Muse

     

    How unbelievable! Oh, no wait it's entirety believable sadly, what damage can be done with the changing of a diagnosis! I wonder if doctors have any idea?

     

    Shelley's quite right about the fever issue and that you need to check the other possibilities. She's also right about having to persevere with the diagnostic obstacle course. I don't know what it will eventually be but I do know that you're worth a correct one.

     

    Take care and keep posting.


  17. Hello Greypilgrim

     

    Please let us know how you get on with your application.

     

    As a word of encouragement, heart involvement does not automatically redline you to the morgue, if so this post comes from beyond! 

     

    When diagnosed I had major skin involvement and nothing else, with negative antibodies (ANA & SCL-70) I was told it was highly unlikely I would have internal organ involvement. This put me off my game so when scleroderma began to target my heart I paid it no mind, in addition none of my doctors were alarmed. Well what began with a left ventricular bundle branch block ended a year later in myocardial fibrosis and serious heart failure, as in queuing to join the redline. My life expectancy at that point was 2 years.

     

    Well, 5 months later I had a biventricular implantable cardioverter defibrillator implanted and hey presto I could breathe again! Although I will always be in heart failure as my heart doesn't work without the device and trying to have anesthesia is a palaver, it's all good!

     

    Internally scleroderma targeted my heart and not in the usual way but I'm still here and there are many people still alive against the odds!

     

    I hope this helps and take care.


  18. Hello GreyPilgrim

     

    I was on methotrexate for about 10 months and just tried it again recently for a month. First time round it made me nauseous for a few days after the dose for a few weeks then no problems until month 10. As with mycophenolate I had few problems with immunosuppressants but the hit intolerable ones. This time it wiped me out immediately so that I was just asleep! I was trying it as a last ditch attempt to heal my foot ulcers, it didn't and as as agreed by my husband I stopped taking it again.

     

    Many people take it without incident and you could be one, let us know how it goes.

     

    Take care.


  19. Good point Pilgrim! We're all different having our own tailor made disease even though there are some guidelines about what scleroderma might do and when. I do wonder how old this 3-5 year stuff is just because I don't know of anyone who has actually experienced it. If you do experience it I must be told so I can refer to you as an example of someone with scleroderma that played by the rules!

     

    I guess these guidelines could help give a newbie an idea of what to expect but for me it gave me unrealistic expectations. When I bought my first wheelchair in year 1 it was an assisted one because I expected to be out of it within 2 years, I moved into a powered one last year and now in year 7 I still have some hard, tight skin.

     

    Now I just want to say that I am by no means jealous of anyone who has enjoyed the 3-5 years experience you understand. Not at all. :emoticon-crying-kleenex:

     

    Take care.


  20. Hello Jerrig

     

    Dermatologists can treat simple morphea and if you're happy with how things are going then there's no reason to go elsewhere.

     

    Systemic scleroderma is always treated by a rheumatologist, you haven't said which type you have, I am guessing limited? Many people get on well with mycophenolate and provided you have regular blood tests you could easily be one of these.

     

    Let us know how things go.

     

    Take care.

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