Waiting for Rheumy appointment. - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Waiting for Rheumy appointment.

Everdean profile image
8 Replies

I haven't been diagnosed with APS, but I have some symptoms . (I take 75 mg of Aspirin a day). Blood tests for APS came back normal. Also 15 other tests came back normal too.

I have coeliac disease and under active thyroid. I have FINALLY been referred to a Rheumatologist, but that is not till July 18th and I am in so much pain all over my body.

I went to GP and she offered me Amytriptaline, (can't spell it) which I know doesn't suit me. So told her I couldn't take it. She offered me another(for nerve pain), but on checking this one out, it seemed just the same side effects so didn't take that either. Finally I'm on 400mg of Ibuprofen 3 times a day.

It may help but I am in so much pain all over my body all the time, the thoughts of waiting for a hospital appointment in 3months time is starting to get me down.

Any suggestions or comments would be appreciated.

Thank you

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Everdean profile image
Everdean
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8 Replies
stillwaiting profile image
stillwaiting

Hello :)

Does your hospital have a cancellation system?

I saw my rheumatologist much earlier by taking a cancellation. Ring the appointments office and ask their process. One of our departments puts you on a list and then rings you up as and when; another requires you to ring at the beginning of each week to ask. You do have to prepared to be given little notice though - I was asked just a couple of hours before the appointment - I snapped their hands off - lol!

Lynn.

Everdean profile image
Everdean

Thank you Lynn I will try.

Susan

SueLovett profile image
SueLovett

Hi Sue,

Although I'm not supposed to take Ibuprofen because I take Heparin it is about the only thing I can take due to all my allergies and it works well.

Beware Paracetamol as it is not usually prescribed when history of liver problems.

Good idea from APS to be notified of cancellations they can flag it up on appointment system.

xx

Everdean profile image
Everdean

Thank you Sue.

MaryF profile image
MaryFAdministrator

Best of luck write everything down, so you don't forget what you wish to ask on the day.. and may be in a rush if you do get a sudden cancellation! Mary F x

Everdean profile image
Everdean in reply toMaryF

Thank you MaryF

I have already a list of symptoms etc. I also gave a list to my GP for my records.

Don't know what to ask though except What is it??

I cope better when I understand what's happening to my body.

I am tired of them saying there is nothing wrong with me when I feel so ill.

I expect you all feel the same.

XX

SueLovett profile image
SueLovett

Call before you go and can go through it withyou if you like xx

Everdean profile image
Everdean in reply toSueLovett

Thank you Sue. That's a good idea.

I will. XX

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