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Hughes Syndrome APS Forum

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Advice for Haematology appointment please.​

pinkyandperky profile image
5 Replies

My Gp referred me to Haematology in December, My appoint is in a fortnight, Please can I have some advice on how to get the best out of this appointment?

before Christmas I found taking aspirin reduced a lot of the symptoms significantly. such as muddled speech, pins and needles in hands during the night heat and pain from the vein in the calf,

Since stopping the aspirin in February I am saying things like let's get the duck to feed the bread. my children find it hilarious. My muscles have painful lumps and feel congested and I am so tired I am woken with pins and needles etc. At least I can tell the specialist this much.

Thanks in advance. Selena

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pinkyandperky
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HollyHeski profile image
HollyHeskiAdministrator

Hi, don't be afraid and take your husband with you!

Bullet point all your questions -

Bullet point all your symptoms, especially the ones the aspirin improved.

List all your health issues going back as far as you can. Including any blood tests.

List all your family health history and any thing else you think relates.

Take Prof . Hughes letter to you and information on seronegative Hughes.

If you start this now, you can add things as they cross your mind.

pinkyandperky profile image
pinkyandperky in reply to HollyHeski

Thank you I am on the right track

HollyHeski profile image
HollyHeskiAdministrator in reply to pinkyandperky

Yes you are ... xx

KellyInTexas profile image
KellyInTexasAdministrator

You just have to laugh at our creative language... I’m sure you find it gets a lot worse when you are tired or have to do more than two things at once.

It’s as if the mother board of our computers malfunction very easily.

Day before yesterday my son and I were in San Antonio ( Texas) as he gad his pediatric hematology appointment for his APS . ( he has it also.)

I was driving, had just parked, and was reaching for my coffee in the cup holder. I told him to wait a second as I had to ,” grab my carpet out of the cup holder.”

He never ceases to be amused!

I’ve found the words I substitute will often have the same number of syllables and begin with the same letter.

As far as your appointment, I think Holly has echoed your already great plan.

I’ll leave you to it- you need to grab your duck and go feed the breads, and I’ll go drink a nice cup of carpet...

pinkyandperky profile image
pinkyandperky in reply to KellyInTexas

I am so glad it is not just me! you made me chuckle, Enjoy your cup of carpet. xx Yes if I am tired it happens so much more.

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