Fed Up!

bailey27

Had my second Rheumy appointment today and have left there totally deflated.
Since seeing her the first time I have spoken to the actual consultant on the phone and he reassured me. I was expecting to go today and get some new medication and some answers, instead all I got was the dr ask me if I'd had an MRI scan (whcih I had before my first appointment with her - the results of this was why I was referred to Rheumatology ion the first place).
I was seen 45 minutes after my appointment and all I got was 5 minutes for her to tell me to come back in 3 months time. No answers - absolutely nothing. All she told me was that the blood test showed that I didnt show something (which I new I was seronegative already) and that I may have AS but can't be certain because I do not show inflammation on the X-rays (but it was clear on the MRI). Then she told me that ebcause there was no inflammation on the x rays I might not have inflammatory arthritis after all. I feel I have a taken a giant step backwards from my first appointment. At least after the last appointment I had a diagnosis.
I honestly dont think half of them communicate with each other nor know their ****$ from their elbow.
She told me that I probably wouldnt have to wait the 3 months but then on the way out I was given another appoinment for the end of September.
I left the hospital in tears as I had put so much hope into this appointment and got absolutely no where at all.
when I spoke to the Consultant on the phone he told me to get the x rays and ultra sound before my next appointment and so he rushed that through for me and I had them the last 2 weeks. What was the point if I wasn't going to be told anything.
I am truelly fed up and just wanted to come on here and let off some steam. It makes me so mad and upset that even as I am typing this message I can feel my eyes welling up.

roczko

Oh what a shame and what a waste of your time.

It's probably not much consolation but I felt the same in the early days of seeing the consultant. He just didn't seem to be able to accept that a teenage lad could get RA so many times I came away from my appointments feeling dejected, ignored and a fraud.

Fortunately quite a few years later I saw someone else and the change in attitude was amazing. Someone who took me seriously and it really helped with my coping with the RA - more than drugs at that time.

Is your GP more sympathetic to your illness? Can you approach them for reassurance and perhaps a letter to your consultant?

I hope your next appointment is more successful.

Patrick

bailey27

Thanks for that!
I am going to go see my GP tomorow and ask him to write or phone the consultant. To be honest I think I will crack up if I have to wait another 3 months. They got to do something, surely!

debatat

Sorry you had such a frustating appt, in the early days it takes ages to get a diagnosis then to get meds sorted, it does try your patience! A good rheumy makes all the difference. I hope that you get on well at your gp appt.

Deb

woodbon

Hello, I had an appointment with a rheummy was awful. When I went to see my GP 2 months latter she hadn't heard from the hospital, which came to light when my GP asked me if I'd mind going for the tests the hospital had just done. She sent me back to someone else, and that was much better. So don't lose hope, ask for the answers to the questions you have and ask to see someone else it need be. Good Luck Sue

skezier

Hi Bailey,

Sorry your appointment was so bad, I think in the early stages it is a bit like that. they take notes and then assess you and take notes and in time it all gives them the picture and what would be the best treatment for you.

How ever saying that I also think the idea of asking to see someone else may be of help. It could at least give you another chance to go through the many questions we all have at times.

Good luck, and don't let this appointment make you too upset as the next one may be brilliant for you. Take care, Cris

bailey27

Thanks for that.
I just dont understand how they can go from diagnosis to possibly changing their minds. I dont even know what happens next.
I dont see the point in waiting 3 months for scan results when they have already seen them a made a diagnosis on them the last time I went.
I can understand how so mnay people get quite down on here I can really relate to you all.
I'll be seeing my GP in the morning and asking for some explanation and advice from him.
Thanks again!

elnafinn

The system stinks :oops: doesn't it? You hit the nail right on the head regarding communication amongst the medical profession about patients. The amount of duplication paperwork and time wasted unnecessarily is unbelievable. Best idea is what you are doing, seeing your gp tomorrow. Ridiculous waiting 3 months. I am sure your gp will be supportive and hopefully be able to do a bit of shaking up somewhere or other.

Good luck,

Elna x

frogmorton

Oh Bailey
This is awful :!:
You get to your GP and get it sorted.
They just haven't communicated have they and you are the poor piggy in the middle.
The diagnosis was probably quite right, just today's one didn't know.
I am so sorry
Please let us know how you get on
Toni (cross!)

valval

you build up your hopes that help is just round the corner and to have rug pulled out from under u like that is terrible i under stand how bad u must feel fingers crossed something gets sorted

bailey27

Thanks, I couldnt get an appointment today so will try tomorow.
I have calmed down a bit now, I was getting so upset yesterday but feel much better for reading your messages.
Hopefully get a better understanding of what is happening tomorow, i'll keep you posted.
Thank you. x

jenzie06

Not sure if this helps or not but I never go in with any sort of expectation at all - I find if I do then I come out really down and deflated (it has even involved me crying in the hospital loo's - people around thought someone had died, slightly embarrassing!).

I take a list of questions I want answered as I never remember what I want to ask once I'm in there and I usually don't leave til I've got a suitable answer or action plan. I think you have to take charge of your treatment. Take a friend too!
I also take a book as ALL consultants are bloody slow. I spent 2 hrs waiting for my surgeon today, he was half an hour late even arriving! I got bored so tried to start a mexican wave in the waiting room. Also I bet my husband an egg custard how long we would be in there. I won at 5 mins!

Keep laughing even when its difficult.

bailey27

Thanks jenzie - I know exactly how you feel. When I came out of the appointment I just cried and wanted to go back in and have a rant but was too upset. I walked out of the hospital in tears, I'm sure someone had thought someone had passed away or that I'd had bad news. I simply didnt have any news!

I went to my GP this morning and he was absolutely fantasttic. He explained everything to me, every scan every x ray and explained in detail what was going on. He basically explained that they wanted to be 100% sure on the diagnosis before they start any different treatment.... he just spent time explaining which the others have not done. sometimes even if you don't get any updates just by simply explaining to you and treating you as a person can make a world of differance. I feel a lot of the doctors just rush you in and out and treat you simply as a statistic and forget that you are actually human.
I count myself lucky I have an understanding GP - just wish they were all like him!

frogmorton

Ah Bailey!
That sounds a lot better. I am pleased that you feel a human being again!
Your GP sounds lovely - can you send him over here?!
Serioulsy at least now you undertsand and know that you haven't been fobbed off. You WILL get the right treatment in the end.
Take care
Toni xx