Crest Syndrome : Does anyone else have... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Crest Syndrome

Banker123 profile image
Banker123
•8 Replies

Does anyone else have dizzy spells 😒 I was in St James's last week - dizzy spells and vomiting Dr said it could be a virus . TIA

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Banker123 profile image
Banker123
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8 Replies
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zenabb profile image
zenabb

Your doctor maybe right.

ukbabes45 profile image
ukbabes45

Yes I have cret syndrome and I've got red ulsers on my hand and my hands are always cold and go white and purple

Yorky profile image
Yorky

Hello, If you live in or near Leeds, I am unsure why you are going to St J and not to see the Scleroderma specialists at Chapel Allerton, under Dr M Buch, consultant Rheumatologist,

Banker123 profile image
Banker123 in reply to Yorky

I went to St James as it was 11.30 pm I didn't know what was causing the dizziness I didn't and still don't know if it is related to Crest. The dizziness was continuous for 10 hours it calmed down when they gave me 5mg of Prochloperazine My blood pressure was high and I felt really ill. I do attend Chapel Allerton The doctor at St James said I need to see my GP , I have an appointment on Thursday ( he clearly didn't know what Crest Syndrome is ) .

silent profile image
silent in reply to Banker123

Dizzyness + High Blood Pressure can be signs of Pulmonary Hypertension, please go see a GP asap! Make sure they know of your Crest, and possible complications that may arise... have you had any previous lung involvement, scarring, fibrosis, typically related to Esophageal issues / acid reflux in Crest ( the E in CREST) ???

Thelma profile image
Thelma

I do not live in your region, though reading the replies, I certainly agree with Yorky. Why wouldn't you be serviced by a closer Physician and Rheumotologist closest to you. Crest Syndrome is the original name, which is better know these days as Scleroderma. When I was diagnosed back in 2008, I was given the name as Crest Syndrome and then when I visited my PCP, he printed a very helpful document from online giving the overview and detail on Scleroderma, which referred to Crest Syndrome several times. The online Scleroderma Foundation has a lot of helpful info. In recent years more research is focused for us, which I'm thankful to. Any auto-immune condition makes us more vunerable to contracting other weird illnesses - our bodily systems are already on the weak side - so we must continue to be patient, read, research, learn, communicate with our doctors and apply a lot of common sense, while listening to our bodies. Exercise and healthy eating helps us to be healthier, think clearer and be more prepared for unexpected flair ups. Healthy living helps us to recover a little quicker and more thoroughly. I wish you better health, peace of mind and endless blessings. Take good care and try not to worry, Banker123. - We also need to minimize stress, worry and anxiety.

Banker123 profile image
Banker123 in reply to Thelma

Thank you 😊

PaleIndian2 profile image
PaleIndian2

I have CREST and also pulmonary arterial hypertension. It was my rheumatologist that referred me to the Royal Hallamshire at Sheffield. Remember, you are in control and if it takes you to demand that you are referred to a rheumatologist who knows about CREST and associated problems then demand to see one from your GP. I did.

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