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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

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 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 Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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