Hospital,me this time,RA clinic: Well people was having... - NRAS

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Hospital,me this time,RA clinic

sylvi profile image
11 Replies

Well people was having my nails done today and then it was off the hospital. My nails are red and silver with glitter on them. Thats me sorted for xmas will have redone xmas week.

Went for my bi-monthly clinic appointment with my rheumy nurse. Some positive a lot negative. Negative first i think. I tried to get a back door in for a second opinion as my gp refused to refer me. She said that it is my right to have a second opinion and i've to go back. To say i was upset was an understatement. I sat there and i broke my heart. All i wanted to know was why was my knee like it was and why do i have to live with it. I'm not allowed to drive and i just want to know whats wrong so i can judge for myself and come to terms with it. Thats not too much to ask for is it.

The positive is i know that the trouble with my eyes is ra. The joint near my ear is probally the cause. My ra is all down my right side. Its my right eye is what is causing my problems, so ra is responsible. Now i can come to terms and manage it as best as i can. Its all about knowing isn't it.

Just to make you all laugh, i had to have a jab in my bum!!!! steroid not what some of you think. Yes i'm trying to joke if i don't i think i would cry.

Another pic coming.

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sylvi profile image
sylvi
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11 Replies

Poor you Sylvi - it is pretty harsh to be told that you can't get a second opinion when it's your right to have one if you want one.

Oh well - if it's any consolation up here where I live we are told we are lucky to get to see a rheumy in the flesh and there's certainly no chance of a second opinion unless you pay through the nose. Nice guidelines go out of the window up here - and the gale force wind is turning into storm force so all the boats and planes are cancelled and my 16 year old son is desperately trying to shuffle his plans to get to Glasgow to hear Deep Purple? Deep Purple was old hat when I was his age but now it seems that it's the coolest thing since sliced bread!

Soon you must be in for a heavy lashing of good luck I feel it in my bones?

Tilda xx

The steroid will help you feel a little better hopefully xx

So sorry to hear of your troubles x

sylvi profile image
sylvi in reply to

Thank you summer. xxx

sylvi profile image
sylvi

My scooter was the only good luck i've had just laterly. Deep purple, what have you been feeding him on music from the past when he was in the womb.Ha ha! I do wonder what i have to do to get not some answers but to be able to get to a place where i could if i choose to get a job,but at this rate i'll never be able to work again.

I know if i do do get any good luck it will be on here first.

Sylvi. xx

julieporter profile image
julieporter

Oh Sylvi

You have my sympathy - sometimes you feel like you're banging your head up a brick wall.Hopefully the steroid jab will help some.

Keep your chin up -your due some good news soon

Julie xxx

sciqueen profile image
sciqueen

Hi

So sorry to hear your bit of bad news. You will have to just out smart them next time!

On the positive site you have got a nearly new scooter that looks the bomb and I imagine that at the very least when you are scooting about town you turn heads in it!!!!

Pick yourself up, dust yourself down and go at it in a different manner. Your down, but you are not beaten yet.

Good luck babe

Sci xx

sylvi profile image
sylvi

Thanks, i'll get there don't worry. I'll regroup and start again. I'll get a referral sooner rather than later.

xx

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi Sylvi

Thought this link might be helpful. It's the NHS information on getting a second opinion. As you will see, unfortunately you do not have a 'legal' right to a second opinion, though it does say they will rarely refuse it. Is there another GP at that practice that you could see? If not it may even be worth changing to another practice in the area if they are refusing to refer you for a 2nd opinion, but obviously this depends on how happy you are with your care overall, and also what's available near you. Here is the link:

nhs.uk/chq/Pages/910.aspx?C...

Kind regards

Victoria Backhurst

Helpline & Information Coordinator

sylvi profile image
sylvi

There are pthers vicki,i'm going to see my gp first and i'm going to tell him i want to know why my knee is still bad and if nhe can't give me an answer i'm going ask again for a referal letter as i need to know whats causing the problem. Thanks again for the link,will have a butchers and see what it says.

Sylvi. xx

Sylvia dear heart, Things have to begin looking up! I am so sorry to learn of all the run-around you are getting! What are you taking for your RA? m Are you on any of the "Biologics" the anti-tnfs, Like Embrel, Humira, Simponi, Remicade, or you may know them as their generic names, like Infliximab???

Seems like, if you are not taking one of these, that should be the next step. No sense letting the disease continue to damage your joints and now your eyes. You might have to get up on the dr's desk and jump up and down and refuse to leave until he does something positive for you!

I just hate it tthat you still have to go through so much. Sending some hugs, an arm around your shoulders, and love, Loret

sylvi profile image
sylvi

Morning loret,Just got up,had a reasonable night,but i have had some strange dreams. The drugs i take are mxt injection,sulphasalazine as well folic acid and painkillers. The nurse gave me a steroid injection on thursday as well. I was surprised by my reaction on thursday as i broke down crying. Never mind i will get it sorted out soon i'm sure. As to getting on drs desk i think that i would break his desk as i've put on so much weight. Also that would be a funny sight wouldn't it.

You alright after thanks giving hope that you are.

Love to you,sylvia. xxx

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