LIVID!

clairc

I just have to get this off my chest, I am absolutely livid at the moment.

Earlier this week I had a phonecall to say my Rheumy appointment had been cancelled because the doc had read my referral and thought I'd be better seeing someone else. They couldn't tell me who I'd been referred to but said they'd sent a letter to my GP.

I chased it up and today I found out the reason why. I needed to see a rheumy about my reactive arthritis but the rheumy has refused to see me because I have chronic fatigue and they don't deal with that. I believe he has referred me to the CFS clinic in Nottingham instead.

I am LIVID! I was diagnosed with reactive arthritis 12 months ago. I was diagnosed with ME (Chronic Fatigue Syndrome) 20 years ago but I believe this was a misdiagnosis and that I've had reactive arthritis all this time because my symptoms were recurrent strep infections, joint pain, mouth ulcers and flu like symptoms. Now this diagnosis of ME is a curse and it seems to be preventing me from seeing anyone about my reactive arthritis. I'm 6 weeks into a really bad flare and the only treatment I've had is painkillers. This is the 6th flare since I was diagnosed.

Why won't anyone take me seriously???

I am waiting on a call back from the GP Practice manager. I'm going to give her hell.

Clair

angel1

I would be bl**dy livid too Clair! Keep hold of that feeling, it will help see you through all this rubbish.

Over the years ME seems to have been used by medics to cover anything they have no answers for. If this is the case with you, then that is disgraceful.

Just a little word of caution. Before bawling out the Practice Manager, try the tearful, desperate route, to get her on side. After all, it isn`t her fault. However, if that doesn`t work........Bawl away!

Let us know how you get on........Ange.

skezier

Hi Clair,

Its not fair at all! Who diagnosed you with the reactive arthritis and could they not help? I really hope they will send you to see someone else, is there another hospital near by with a different rumo in it? You could ask to be sent to see a different one and get it sorted that way. I wonder again if the person who diagnosed you with reactive arthritis could help?

The problem with cfs is its a nail they can hang things on! I got a nail and its gets a lot of coats on it and that's so annoying so I do understand your frustration. When the practice manager calls try to stay calm and just ask to see a different rumo about the reactive arthritis! If they wont help then I am not sure what you can do but I do think its your 'right' to ask fr a second opinion.

I really hope you can get a way to be seem Clair and I am sorry your hitting a brick wall just now. I really hope the practice manager will be helpful. Cris x

clairc

I spoke to the practice manager and let her know how I felt! I now have an appointment to see a GP this afternoon to discuss it.

The manager said she didn't believe they were at fault because the referral letter did say I had reactive arthritis but the consultant's receptionist thought that the doctor probably thought the reactive arthritis was secondary to the CFS. I told her that everyone was was discriminating against me because of my CFS diagnosis and she said well they have to put it in the referral because it's part of my medical history. Yeah, but they don't have to put it at the beginning of the letter do they???

I'm hoping I can get something sorted. I've not had a good week, had a virus/chills/fever thing since monday afternoon, doc thought it was ReA complication and said to go to A&E but A&E said go back to your GP. I have pain radiating from my hip down my right leg, lower abdominal pain, my bladder feels like it's on fire but hospital said there was nothing wrong with me!

I know there are people in much worse shape than I am and I feel silly for moaning so much but this thing has ruled my life for 20 years and if there is a chance it can be managed with a few pills then I want go ahead and try them, not be fobbed off with a dustbin diagnosis of CFS and left to rot.

I'm just glad I've got my husband and my kids to keep me going.

I'll stop moaning now

speedalong

Good luck with your GP appointment this afternoon. Let's hope he rings the rheumy secretary this very afternoon and insists you do have an appointment. Definitely do the tearful bit this afternoon!!

Speedy

dreamdaisy

I think you are barking up the right tree, so to speak. The CFS diagnosis isn't helping and I think you are caught up in a medical Catch 22. Someone has to react appropriately and hopefully your GP can do something in the right direction. I wish you well for this afternoon - let us know the outcome. DD

frogmorton

Clair

I am right behind yo on this one - the rifght word IS discrimination :shock:

You have been labelled for 20 years.

Be strong and firm this afternoon - are you going with anyone?

I hope so, but your anger should stand you in good stead to fight your own corner if you have to.

Love Toni xx

tillytop

Hi Clair I am OUTRAGED on your behalf and feel so frustrated for you. This is a classic case of specialists only being interested in their own area of specialism which means that those of us who have conditions which affect more than one bit of us get pushed from pillar to post with little help and support from anywhere.

Well done for taking this up with the practice manager this moring. Like Toni says, hopefully the fact that you are so angry, will mean that you are able to make a strong case to your GP this afternoon. I believe that it is the GPs responsibility to move this forward on your behalf, and to make sure that you see the appropriate consultant to get the treatment you so badly need.

Will be thinking of you this afternoon Clair. Please do post with an update later if you feel you can, to let us know how you have got on.

Love Tilly x

clairc

I've seen the GP and he's going to sort something out for me. Woo hoo!

We had a very long chat and basically he's going to wait for the letter from the consultant to see where he's sending me on to and he's also going to investigate sending me to another specialist outside the PCT. I gave him a list of people I'd found on the internet. He said that would be tricky as he would have to justify why I can't be treated by my own PCT, it may take quite some time to get sorted and it would mean quite a trip to go see someone but it's something I'm prepared to do to get treatment.

Fingers crossed!

And best of all I haven't had any pain killers since this morning so tonight I might partake in my first glass of wine in 6 weeks *hic*

Clair

frogmorton

Hi Clair

See wine oclock thread...already started

I am so so glad things are going to sort

HOORAH for your GP!!! I love him

So very pleased now you can have a good weekend.

Love

Toni xx

tillytop

Hi again Clair - so, so pleased that your GP is taking control of the situation for you. It sounds as if it might take a while but hopefully you can now feel that things will move forward.

You enjoy that well-deserved wine girl!

There seems to be a bit of theme going on here - DD's been in the pub, the next thread I read was called "Wine O' Clock" and now yours! I think I might be missing out here!

Love Tilly x

ironic

Hi Clair, What a day!!!! Well done for getting things sorted out
It does seem to be a problem when they put a convient illness to hang everything on. I have heard of this before, makes everything a up hill stuggle. Still you look as if you have a good Dr there and hopefully things are going to change for the better.

Enjoy your glass of wine. I will be joining you later
lV, iX

tkachev

My daughter has CFS but she was sent to a rheumatologist because of the link with me, an R.A sufferer. She was also checked out for thyroid. They are all auto-immune diseases. Its a shame you cant see both really, just to make sure.

Take care
elizabeth