A bit peeved: Went to Drs. today... - Hughes Syndrome A...

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A bit peeved

donnabrain profile image
7 Replies

Went to Drs. today

sometimes I get an "egg" on the side of my ankle , but have never managed to co-ordinate an appt to when it is there

Is that inflammation? I asked

I should say so! was her reply.

So I said ,here,s the thing,, you say that is inflammation on my ankle, another Dr and an OT have said I have inflammation in the other ankle,

another Dr says my lungs are frequently inflamed

The local hospital found inflammation recently

My eyelids and left cheek often become visibly swollen, and I have often felt the inflammation myself on my elbows.

How comes then, my inflammatory markers are always negative (this is what I was told at the lupus unit)

Are they ,she said in a tone that suggested otherwise (she was reading the notes on the screen in front of her)

Turns out there were a few positives

She was going to refer me back to the lupus unit but noticed it is not that long since they discharged me (again)

She is going to write and ask if I can be seen again or at least have a phonecall

She is also going to ask if I can have an annual check up, just to keep an eye on things

Going round in circles or what?!

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donnabrain profile image
donnabrain
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7 Replies
MaryF profile image
MaryFAdministrator

Hi there join the club that many of us belong to! And if you get things like this coming up take a photograph as it I know often when I need to see somebody either for myself or the children, whatever it is has a habit of clearing up on the way to the appointment only to reappear afterwards! MaryF

donnabrain profile image
donnabrain

I was lucky today Mary,as I was just out of the shower and off to the chemist to collect my Nomads as I had run out(aspirin, omeprazole and statin)

It is a bus ride to the chemist, and my Dr is just round the corner from there, and they NEVER have any appointments

The "egg" had been there all day and on the off-chance I rang the surgery(still dripping wet and in a towel) and was told that a cancellation had just come in and could I be there in half an hour.

It takes just under half an hour to get there so off I went with wet hair

So at last a Dr has seen the "egg" and as she was a lovely Dr (newly qualified, but not yet a GP and so has not yet got that way of hurrying you) so I was able to ask questions and explain things that I previously have not had enough time to

She said that there was some evidence pointing towards RA but that the reason why no-one has ever offered any medication for this was because of side effects and that they are only offered if a persons symtpoms interfere with normal daily life

I was able to point out to her that I was sitting there at 4-30 with wet hair, having only just got round to showering and dressing and that that was not unusual for me

she asked me if I struggle more in the mornings and I wanted to shout Hell yeah! as I have been trying to tell anyone medical that I come into contact with that I just do not function properly in the the mornings any more(10 years now) and it was the first time that I felt that it actually registered

cami profile image
cami

This is interesting to me, as I have similar...I have an 'egg' that appears on the inside of my elbow.....both elbow joints are extemely painful. I too have negative inflammatory markers and tested negative for RA although I do have arthritis in every single joint! I too have problems functioning in the mornings. Would be interesting to see the outcome of this if you dont mind!

Regards

Pauline

Lure2 profile image
Lure2

Hi donnabrain,

I hope you can find an APS-doctor. I think you ought to have one.

Regards

Kerstin in Stockholm

.

donnabrain profile image
donnabrain

Will keep you posted Cami, Lure2, I have been under the care of Prof D,Cruz since 2006 but have three times been discharged back to the gp care (who of course have little to no understanding of my condition and keep sending me back)

IHPA profile image
IHPA

Are you able to take photographs of the egg when it happens? I take photos of my daughter's inflammation when it happens, and email them to the rheumatologist.

donnabrain profile image
donnabrain

can do :)

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