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Hughes Syndrome APS Forum

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Excellent haematologist and Rheumatologist in Kent, Uk

WendyWoo50 profile image
WendyWoo50
β€’9 Replies

We all know how hard real help is to find in the form of specialists so I wanted to share my recent experiences.

Yesterday I saw Dr Gillian Evans at Kent and Canterbury Hospital. She was amazing. She really 'got it'.

She didn't have a magic wand but she really saw and understood what was going on physically and how that made me feel emotionally. She had a lot of knowledge and did her best for me, as did her nurse Michelle.

My rheumatologist is Dr Denise DeLord who understands APS (as well as Lupus and Sjogrens and Fibromyalgia that I have too) she definitely goes the extra mile to help me.

I do always take a supporter with me and I always prepare for appointments. (This helps make the most of the appointment time).

I feel more hopeful than I have for a very long time - I wish the same for you all πŸ’‹

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WendyWoo50 profile image
WendyWoo50
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MaryF profile image
MaryFAdministrator

Hi, can you check under our pinned posts and see if she is already there, if not we will add her, and you can email her the new charity website: ghic.world/

MaryF

WendyWoo50 profile image
WendyWoo50 in reply to MaryF

How do I do that? How do I find pinned posts (on my iPhone) I'm not great with technology! πŸ’‹

WendyWoo50 profile image
WendyWoo50 in reply to WendyWoo50

?

WendyWoo50 profile image
WendyWoo50

Thank u. It's been one of those things I've been going to do. I know I should!

Everything's just too much trouble. It's not the money or having the test but it's the organising. Pathetic and illogical I know.

I've been to hell this year and am still there. I have *Latent Sinus Node Disease that's been finally diagnosed this week.

With an average pulse of 45 all year and average oxygen sat of 90% I'm sure it has made the APS worse. Logic tells me it must have???

[*latent - not yet fully developed.]

{Sinus Node regulates the heartrate - pulse}

(Disease caused by what??? Possible autoimmune?)

Anyway - I'm now on the list for a pacemaker finally!!!

Thank u for the nudge I must kick my but and get onto it

PS Last week my B12 result was normal πŸ’‹

WendyWoo50 profile image
WendyWoo50

I've just clicked on the links

1= 3 tests

2= 6 tests

3= same as 2

but I'd like the additional ones too.

Please can u give me that link.

Thank u so much for ur time πŸ’‹

WendyWoo50 profile image
WendyWoo50

Thank u so much πŸ’‹

WendyWoo50 profile image
WendyWoo50

Ok I'm such a pain I clicked add to basket - nothing! I tried several times.

Is it me? This is why I struggle with motivation! X

WendyWoo50 profile image
WendyWoo50 in reply to WendyWoo50

I went back to it and it worked fine! Must have been a glitch.

I've ordered the plus test and a nurse home visit. (I assume they will ring me).

They did not advise the fingerprick test and the nearest clinic is 2 hour drive. So I'm awaiting an appointment now. Thank u for ur help πŸ’‹

WendyWoo50 profile image
WendyWoo50

The nurse is coming on the 18th to take my bloods. Can't wait to see the results

Thank u for ur help - will let u know what the results are πŸ’‹

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