Symptoms and Diagnosis
Posted 26 July 2011 - 06:28 PM
Posted 26 July 2011 - 11:26 PM
Yeh I can just imagine how 'befuddled' you and hubby are feeling right now, I have had systemic sclero for 6/7 years, and I still don't know a whole lot about it; it's a very confusing disease. I was diagnosed by a blood test, back then I had known 4 friends that all had scleroderma so I was very aware of it's symptoms so when I started to show symptoms (mainly skin tightening ) I went to general practitioner and asked for a blood test for sclero and yep I had it, and from that point my symptom list just increased.
There are quite a few very knowledgeable people here that know scleroderma and all it's unfriendly characteristics plus seem to know a great deal about tests and treatments.
Sorry I can't be of more help but just hang in there until one of these well versed people get to read your post, I'm sure they will be able to advise you.
Good luck to you and hubby
Posted 27 July 2011 - 05:21 AM
Firtsly welcome to the Australian sub forum, so glad you came on board.
My daughter was diagnosed 12 years ago with scleroderma, five years after I joined the committee of Scleroderma Victoria and now Scleroderma Australia. Our aim is support and help with research.
But back to your question. It is very difficult for scleroderma to be diagnosed without a full set of tests. I know of some people who after going through all the tests are very disappointed that they did not get a diagnosis at all, some being labled Mixed Connective Tissue Disorder and of course this is very confusing. Although it is not good to be diagnosed with scleroderma, at least you get some clear answers.
In each State in Australia there are scleroderma clinics run by a group of dedicated scleroderma specialists. They call their group ASIG. At these clinics you should be able to get a better understanding. Your general practitioner could refer you there.
These clinics keep track of all their patients on a database and my daughter attends each year for research purposes and also to have another specialist track her progress. For instance she was really sure that her skin was tightening again, but after her yearly visit to the clinic her skin score had considerably improved. You can also attend these clinics as your primary carer, along with a wonderful general practitioner.
You can find ASIG on the internet if you want to folow this up.
In the meantime I wish you all the best. I know how frustrating it is for both yourself and your husband.
Posted 27 July 2011 - 05:58 AM
Welcome to these friendly and informative forums!
You're certainly in good company feeling 'befuddled' and confused by Scleroderma; sadly it is a notoriously difficult disease to diagnose. Although blood tests can help to point towards it, they're by no means conclusive as many people exhibit symptoms of Scleroderma but their blood tests can all be negative. Also there can be other autoimmune diseases which can Overlap with Scleroderma making a diagnosis even more complicated. Just to give you an example, I have tested positive with the Anti-PM/Scl antibody for Polymyositis but thankfully so far do not seem to had any of the symptoms of it.
Is your husband being dealt with by a Scleroderma specialist? This is very important as sadly many rheumatologists do not have the expertise to diagnose this complex disease. Very often Scleroderma will be diagnosed by symptoms and the results of through testing which is why you really need someone with a extensive knowledge of the disease.
I've included another couple of links to Fibromyalgia and Polymyositis which I hope you'll find interesting and informative.
I'm very pleased that you've found our forums and joined our community where you will find a wealth of knowledge and support and I'm looking forward to reading your future posts.
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Posted 27 July 2011 - 09:28 AM
Sorry you had to find us, but I am glad you did. Welcome to the Forums!
Why do you think your husband isn't satisfied? Not enough tests, he doesn't think his symptoms match? Something else? It's hard to come to grips with a diagnosis sometimes. I have had a doctor tell me (after a diagnosis by an expert) that I couldn't have scleroderma because I had no skin thickening. I have the form known as systemic sclerosis sine scleroderma - yes, no skin thickening.
I was diagnosed on the basis of a high Anti-Nuclear Antibody test, various tests which demonstrated GI involvement, others which showed I have pulmonary fibrosis, and still more (more tests? really?) that showed I also have pulmonary hypertension. I was being evaluated at the #1 lung hospital in the USA, where they also have a huge interest in autoimmune diseases, so they threw everything they had at me.
Because I had had a long journey, with some misdiagnoses and the famous no diagnosis, to a correct diagnosis, when I got one that felt 'right', there was no denial. I did a quick pass through the other stages (anger and grief) and hit acceptance pretty fast. But could denial be part of your hubby's dissatisfaction?
I would agree with Robyn and suggest your husband be followed by a scleroderma expert if at all possible. They know the most about all the manifestations of this disease and they are also the first to know about new methods of treatment.
I wish you and your husband all the best and hope to see you around the forum.
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Posted 28 July 2011 - 02:18 PM
Welcome to the forums. My journey to diagnosis was a quick one, skin involvement started and 7 months later I could hardly walk, no longer work and got diagnosed as soon as I saw the first rheumatologist. I'd been misdiagnosed by a few dermatologists when the symptoms started but as soon as I saw the rheumatologist it was a no brainer because of how much skin involvement I had. I went 2 years before any internal involvement but ended up in serious heart failure the following year. Oh well if you're gonna do it...
My arrival at acceptance was a relatively quick one, I think the sooner you get there the better!
I also recommend that your husband sees a scleroderma expert, then there's no doubt for either of you.
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