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Biomarker for Diffuse Scleroderma skin has been discovered!


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Update - Finally Getting Somewhere


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#1 Sharonvandee

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Posted 17 December 2007 - 02:50 AM

After two and a bit years of sheer frustration we are finally getting to a point where the medical porfession are starting to co-ordinate the care and managment of my symptoms.

So far
Gastroscope- found emptying issues in the stomach, helio bacter virus, gastroenteritis and the valve on the top and bottom of the stomach no working plan must loss 10 kg so nissen fundipication can be performed, on motilium to help with emptyng and nexium for reflux.

Dietician discussed best ways to get nutritional value when you can not swallow properly. This was an eye opener and with a new fancy device I am now eating simular foods to the rest of the family just mine is minced up, still tis better then nothing

Heart Specialist found problem with a irregular heart beat and placed me on verapramil has helped with the palpitation and racing heart though has really helped the raynauds.

Denitist diagnosed sjorgen and says the teeth are slowly being destroyed but gave me some product which will help with saving the teeth for a while longer, she was amazing, knew what the disease was all about and even got a blanket to put over me as the air conditioning set my raynanuds off, she restored my faith in dentist

GP placed me on cereblex for arthritis pain which helps but has not so good side effects.

All round diagnosis is now mixed connective tissue disease.

Raynauds is still effecting me with the over use of aircondtioners everywhere I go but at least in summer I can go outside and get warm bonus is I have over the last few weeks relanscape our yard so I now have a haven to visit when I need to warm up.

I would not have gotten through the past months with out the support of everyone here, especially Tangelo *hugs* so thank you all and a Happy Holidays to all may we all get out holiday wish :) for those yet to be diagnosed hang in there, for those diagnosed every moment is precious dont forget to smile
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 janey

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Posted 17 December 2007 - 04:33 AM

Sharon,
Thanks for the update Darlin'! I'm thrilled that the doctors are finally finding out what's going on and taking action. The best part is reading that you can eat again. It's also good to have that "good" side effect from the verapamil. Anything to help that Raynaud's!

I hope with all of these treatments and medications that you start to see a huge change and things improve. Please keep us up on how you are doing.

Big Hugs,
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Sweet

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Posted 17 December 2007 - 04:46 AM

Sharon,
Wow! I am so excited for you. It's a good feeling to know you are being listened to, understood, and then getting the care you need.

Sorry you have so much going on, but I'm really glad you are getting help.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)