Does anyone know what my gp is thinking? - LUPUS UK

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Does anyone know what my gp is thinking?

KathinAyrshire profile image
14 Replies

Saw my gp yesterday with new problems (diagnosed 18 months ago) Left foot and leg to the knee now losing sensitivity, so much so that it is effecting my balance, right foot going the same way but more slowly. Both hands in flare since Christmas Eve and now everything is so much more painful and so so slow! Neck only has about 20 degree rotation and shoulders and arms swollen and very painful. My gp is lovely and honest, when I was diagnosed (she thought it was gout) she admitted she knew little of the condition, but believe me she has done her homework since! I am due a routine bloodtest next Monday which is normally five tests but she has asked for a further 8!! Before you ask I don't get a cup of tea and a biscuit afterwards.

On the basis that forewarned is forearmed, has anyone the vaguest idea if what she might be thinking of? All outlandish ideas considered!!

To all of you out there, so very many thanks for keeping me grounded and sane.

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KathinAyrshire profile image
KathinAyrshire
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14 Replies
kittykat68 profile image
kittykat68

my dr phoned me tonight actually ,ive got 2 go and have 8 more blood tests 2moz, do you look on the forms to see what boxes they tick, that might help, on the haematology one (red) and the green biochemistry and everything they do i ask for a copy of my results hope this helps :)

KathinAyrshire profile image
KathinAyrshire in reply tokittykat68

It's all done on computer, no paperwork as it feeds directly to my nearest hospital 50 miles away. Many thanks for the suggestion though.

Adamine profile image
Adamine

I'd just ask them - I always ask, and also ask for a print out of the results...

Hate the thought they know more about whats going on WITH ME than I do... Xx

KathinAyrshire profile image
KathinAyrshire in reply toAdamine

Adamine, this is what bugs me, that they know more about me than I do, however, I will ask for a print out.

Many thanks.

hazelHollingsworth profile image
hazelHollingsworth

I had the loss of sensitivity in my left leg/foot and my Lupus specialist sent me for an MRI and CT scan the next day. My spine had twisted and was trapping a nerve. Though I can't see it being that as it would not show up in blood tests, Like Adamine says, Go ask your doctor, tell them you are worried and try and make an extra app. with your Lupus consultant if you can or ask the Lupus nurse , if they have one. Good Luck.xx

KathinAyrshire profile image
KathinAyrshire in reply tohazelHollingsworth

Hazel, I don't have a Lupus specialist or nurse, nearest specialist in Glasgow 80 odd miles away my only, repeat only support is my gp, the rheumy at the local hospital is so busy it takes 6 months for an urgent appointment. Which hospital or specialist do you have to get an MRI and CT the next day, are you private??

hazelHollingsworth profile image
hazelHollingsworth in reply toKathinAyrshire

No it is NHS. I am with the Royal Halamshire in Sheffield and that is where my Lupus specialist is. They also have a nurse that is sponsored, I am sure by Lupus uk. As I said it was the Lupus specialist that got the tests booked for the next day but it was at 8.30PM. last app. saved for emergancies.

When I read about things on this page the more I realise just how Lucky I am. He even lets me e.mail him with any problems and gets back to me within the hour. Once he was in the Que at Gatwick about to board a plane! He even then said if the problem get worse to mail him back and he would contact the nurse to see me.

I am so Sorry that you are not as fortunate as me, but if you phone the hospital and say you will take any 'Cancelations' they would then phone you if someone were to cancel the same day or day before. I have used this several times. Good Luck my friend, if all else fails, go to A & E and see them, once you are there they are obliged to examine you and might get an MRI appointment for you. xxx

KathinAyrshire profile image
KathinAyrshire in reply tohazelHollingsworth

Dear Hazel, you really are so lucky what is the name of your specialist. I could drive to Sheffield nearly as fast as to Edinburgh. I phoned today to say that the situation was getting worse, quickly, to be told there was no cancellations or hope of an earlier appointment than 2nd April and I didn't dare change that as there was nothing then into the foreseeable future!! Smile sweetly at your specialist and take him a bottle of wine!!

Regards and thanks

hazelHollingsworth profile image
hazelHollingsworth in reply toKathinAyrshire

Dr.M.Akil. Hospital phone number 0114 2711947 That is the No.for Rheumatology.

Main no receiption 0114 2711900

Royal Hallamshire Hospital

Glossop Road

Sheffield

S10 2JF

Think you will have to be transfered from your hospital or refered from your doctor. He has a Very full appointment list but his co-doctors are just as good. You might have to wait quite a while for your first appointment if they accept you.GOOD LUCK. xx

KathinAyrshire profile image
KathinAyrshire in reply tohazelHollingsworth

Thanks hazel, I will see what my gp thinks of the idea, I'll keep you posted.

Many thanks again

hazelHollingsworth profile image
hazelHollingsworth in reply toKathinAyrshire

Don't expect extra service as a norm, I have been with him and built up a Good dr. Patient relationship over the Many years I have know him. But All the staff in that dept. are Brilliant.

Thaddeus profile image
Thaddeus

Hello

Without knowing what the test are, we cannot guess.

But it does sound like your doc is now on the case, and taking your problems seriously. Which can only be a good thing.

i could hazard a guess about loss of feeling and mobility, but I dont think it would be entirely helpful. Gps work on the balance of probability, and in most cases there is a simple and rather domestic reason for a patients problems. When they get a oddity like us lupie types it raises a lot of questions, which could lead to a lot of possible answers. Best take it slow and get to the right one.

KathinAyrshire profile image
KathinAyrshire in reply toThaddeus

Thanks Thaddeus, I really agree with what you say, without my gp I would be lost as the 'specialists' are fare too removed and busy to even consider me as a human being. The main trouble is I wasn't even in the queue for patience, ah me, carry on regardless, which is a little difficullt tonight because of the pain and odd sensations. Many thanks

Thaddeus profile image
Thaddeus in reply toKathinAyrshire

It doesnt help that Lupus will always make processing the info that much harder.

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