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75 year old mum with CREST

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Hi.. my 75 year old mum has been diagnosed with CREST syndrome since the last couple of years. Since 12 years, she was complaining of "I dont know what's happening to me" till she was diagnosed. At least now she knows it wasn't in her imagination!

I was wondering if anyone else is having similar symptoms and if they have found relief in some way. Her symptoms are:

- difficulty in swallowing. To an extent that since the last one year she can only have pureed food.

- Since the time she stopped having solid food her weight has dropped by 10 kg. She's about 40 kg now.

- No control over her bowels. She's had IBS since the last 15 years, and it got steadily worse. Now she doesn't leave the house.

- Her balance is poor. She's not steady on her feet.

- Her speech is muffled. She struggles to speak. A few months ago it became really bad and she could hardly say a word, but  thankfully it's reversed a bit since then.

- Her hands and feet get cold and blue. She can't take the cold anymore.

- Her face has changed. She looks startled all the time. Also, she makes involuntary movements like mocking

- She has tiny red spots on her face.

- Her head bobs involuntarily.

- She complains of a pulling sensation in her head.

- She suffers from anxiety and insomnia


I'd be grateful if anybody could offer some kind of advice to make her life more livable.

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Hi Ashwin,


Welcome to these forums!


I'm sorry to hear that your mother has been diagnosed with CREST and is suffering with such unpleasant symptoms. We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise to advise her on the most effective treatment and management.


I've included links to our medical pages on Gastrointestinal Involvement, Raynaud's, Telangiectasia and Anxiety and Attitude, which I hope you'll find helpful and informative.


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 Ashwin, Some of your Mum's symptoms don't sound like Crest at all.  The swallowing and coldness, yes.


Either there is something else at play (not yet diagnosed) or maybe reactions to medication being taken.


Unfortunately, because the professionals do not investigate thoroughly or simply can't make a correct diagnosis, they put it down to anxiety or imagination.  In my case, the mental health tablets they put me on caused 70% of my symptoms until I refused to take them any more.  


Whatever it is, I do hope she is able to find some relief from it one way or another.



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Hi Jo,

Thanks for your reply. Thanks for the references to the specialists. We live in Mumbai, India, and I found one listed in a city a few hours away. I will go through the information too. Thanks for the links.


Hi Dimarzio,

Thanks for your reply. Mum has been on anti-depressant and something called Zapiz for years, to help her sleep. I'll ask the doctor if she can wane off them for some time to see if it helps.


Thank you both for your advice and concern. Can't tell you how much I appreciate it.


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