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Scleroderma - looking for support.

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13 hours ago, dimarzio said:

Needs to be checked out because swallowing difficulties could have a number of causes including oesophagal dismotility or narrowing of the oesophagus (which can be stretched under anesthetic to improve matters.)

 

The more sinister problems are much less common but need to be excluded.  Do you have reflux problems or blood coming from either end?

Thanks for your reply; no blood thankfully. Lots of saliva though.

 

 I've always suffered with the acid indigestion side of things, but the Lansoprazole has always worked well for me. The dismotility narrowing of the oesophagus is what I fear could be happening. I really could do without the aggravation of a general anesthetic and time in hospital.

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12 hours ago, Ally 1973 said:

Hello Lee,

 

I also have Scleroderma but wasn't diagnosed, and probably had symptoms, until I was in my 40's so I imagine you are pretty much an expert in the condition.

 

Obviously sorry to hear you have been suffering with it so long and now have issues swallowing. I have had problems with this for some time and actually avoid certain foods; apples, crusty bread etc., as the feeling of food being stuck also greatly panicked me. I always have to ensure that a large glass of water is available with my meals, the severness of difficulty swallowing depends for me on whether I am responding well to medication. 

 

I have recently had two courses of Rituximab are hoping to feel the benefit very shortly. Anyone else had this treatment? 

 

Ally 

Hi thanks for your reply.

 

Yeah, it's been a pretty long road. I have had most of the tops of my fingers amputated because my skin couldn't keep up with my growth. I only really have limited use of one hand. Collapsed lungs, terrible bowel trouble. I was hoping to get away with any swallowing difficulties. It hasn't stopped me having a good life though, I'm married with a little boy.

 

Just need to get over this next hurdle. 

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Hi Lee,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with scleroderma and Raynaud's for such a long time, with the added complication of Type 1 diabetes thrown in for good measure. It is possible that the Dysphagia (Difficulty Swallowing) that you are experiencing could be due to scleroderma, although it could also relate to a number of other health problems and not be directly connected.  

 

Although you do have a specialist dealing with you at the Nuffield Hospital, it would be beneficial to consult a specialist dealing with scleroderma. We do recommend that our members (if possible) consult a listed scleroderma expert, as this bizarre disease does require specialist knowledge and expertise to deal with all it's little complexities. In view of the fact that you have other health problems as well, I would suggest that you go back to your doctor and let him know that you are experiencing new and worrying symptoms, with a view to getting a referral to the appropriate expert.

 

I'm very glad that you are still able to have a good quality of life, despite your medical problems and please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde

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Hi guys, so I have been to hospital and it was good news.  

 

I had a severe throat infection which was causing my throat to stick because my airway is so small and it was causing all those symptoms. So a course of antibiotics will hopefully sort me out. 

 

Thanks Lee.

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Hi Lee,

 

I'm very pleased to hear that your throat constriction can dealt with by antibiotics and that it is not as serious as you feared. :bravo:

 

It is important with multiple health problems to always seek medical advice for any new or worrying symptoms. Unfortunately because of the diverse nature of scleroderma, it's all too easy to blame every new or different symptom on the disease and by doing that it can delay getting the correct treatment promptly.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi.

 

I don't have scleroderma but my wife has diffuse systemic sclerosis. Unfortunately it isn't officially diagnosed. That in itself is a long story. She has two other immune system conditions, both rare, and both dermatological in nature. She is an NHS patent. A few years ago a general practitioner (GP) told her she had elevated antibodies in her blood that could indicate sclerosis. Last year she started to develop symptoms that pointed to systemic sclerosis (pains in joints, pains in kidneys, issues with swallowing, weakness and skin tightening) and was admitted to our local hospital as an in patient for over a month where every test under the sun was done on her.

 

The most confusing part of all this is that during that time quite a few doctors who are not rheumatologists saw her and agreed she had systemic sclerosis. However, the two rheumatologists at the hospital did very little to examine her and immediately stated that she did not have the condition. Since then there has been a back and forth between general practitioner's and specialists. The most recent visit was to a dermatologist who she has been seeing regularly for one of her other conditions. This woman had an understudy who was actually doing a research study on systemic sclerosis and also confirmed she had the condition. However, because none of those that agree she has this condition are rheumatologists, they apparently cannot officially put the diagnosis on her medical records. Currently her records show as fibromyalgia and we have reason to believe that this may be because she also suffered from anxiety at the the time she was admitted to hospital.

 

Her symptoms are getting worse. She is in a lot of pain most days, has developed chest pains and a cough. Gets weak and tired very quickly and can feel her skin getting slowly but progressively tighter. We are worried that she will not get a proper diagnosis or treatment. She has been given nephradine, quetiapine and an emollient cream. Doing my own research I think she should either be on steroids (which she once had for her other conditions) or immunosuppressants.

 

Any attempt to get a proper diagnosis is getting blocked. Often at general practitioner level. Is there anything we can do to get her to see an NHS specialist who is able to overrule the original rheumatologists and to confirm (or deny, I still hold on to the small hope that it isn't scleroderma although we are 99% sure it is) the diagnosis and start her on treatment?

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Hi CyberSamurai,

 

Welcome to these forums!

 

I'm sorry to hear that your wife is having so many problems getting a scleroderma diagnosis. I can understand your frustration and I'm afraid that it will not be much comfort to you to know that this is a fairly common problem. Scleroderma is notoriously difficult to diagnose, not least because it affects everyone differently, it can mimic other diseases and the average general practitioner seldom comes across it.

 

I'm in the UK and fortunately (or unfortunately, depending on your point of view) I developed lung involvement, which necessitated my general practitioner (who was young, keen and on the ball) taking immediate and aggressive action and I was diagnosed and treated very quickly at The Royal Brompton and The Royal Free Hospitals. In my experience, I would say that the NHS is excellent treatment wise, but their administration is sadly lacking, resulting in the left hand having very little idea what the right is doing.

 

Please note I have no medical training, but in view of your wife's deteriorating condition and the symptoms you describe, I would suggest that you go back to your general practitioner and insist on a referral to a listed scleroderma expert, as unfortunately the average rheumatologist has very little experience of such a complex disease as scleroderma and it is important to obtain specialist treatment as soon as possible. It will probably necessitate you having to make a large fuss (frequently!) but I've found that having a determined and tenacious personality is the best way to ensure that one gets the treatment needed. :wink:

 

Kind regards,

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Joelf. Thank you for your response. I did take a look at that directory but the doctors are all in England and we live in Wales.

 

1. Is it possible to be treated by a specialist in England if you live in Wales?

2. Is there a similar list for specialists operating in Wales?

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Hi CyberSamurai,

 

I'm afraid we don't have a list of scleroderma experts in Wales; although having said that, I don't believe that there's any reason why your wife couldn't go to an English specialist. I would imagine she would need a referral from your Welsh general practitioner, though, which could possibly be problematic.

 

The best thing (in my opinion) would be to approach him/her and see the reaction.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi CyberSamurai,

 

Although the specialist in Dimarzio's link isn't on our list of scleroderma experts, he does specialise in connective tissue diseases. Ideally we do recommend listed specialists, but unfortunately, if there is no one available to you, then then it's probably worth you consulting the very best rheumatologist you can find.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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