Bad appointment :(

claircoult

Hi!

Need some virtual hugs if you don't mind, went to see the Rheumy in Rotherham today but it didn't go so well.

I September I went to Norwich to see Dr Merry who diagnosed me with Palindromic Rheumatism and he wanted me to go on a trial of hydroxychloroquine. He couldn't treat me because I live 3 hours away so he wrote to my GP and asked for me to be seend my a local rheumy.

2 months later I see a registrar at Rotherham who declares he disagrees with Dr Merry's diagnosis. He said I don't have Palidromic rheumatism and he won't give me hydroxychloroquine. He says people with ME feel ill and get joint pain and that is what I have.

I went spare at him. I said if that's so then why do I have raised CRP, ESR, HLA B27 positive and slightly positive RF??? He said they can be positive for other reasons and said again that I don't have PR. I pushed him further and he went to speak to the consultant and now I have to go back next week to see her. But he still doesn't think I have PR because there is no evidence of inflammation in my joints when he examined me.

I'm gutted. I've come this far, got my diagnosis and it's all been for nothing if they won't treat me. They did take bloods and did x-rays but I'm not overly hopeful. If they come back normal it will support the diagnosis of PR but I just know they will say they are normal because there is nothing wrong.

I don't know whether to be angry or cry. I'm exhausted and I've got to go through it all again on Tuesday. Nothing is ever easy is it? *sigh*

Clair

skezier

Hi Clair,

Welcome to the forum flower but what a horrible day you have had.

Your bloods should mean they do treat you so try to stay positive... registers are not always the best ones to see and maybe the proper one will help more?

I wonder if your gp can help at all? Sometimes they can give you something if they talk to the rumo's or mine has changed the dose etc that way.

I wish you had had a better day and sorry I can't really help but can leave you a ((((( ))))) and a hope. Nice to meet you. Cris x

angel1

Clair, come here for that big hug.

You already know what this means don`t you? More fighting for you. You have come so far, and you can`t give up now. NO ONE knows your body like you do, and especially not a Registrar who may well be just flexing his "knowledge". We`ve all met `em!

See if you can take a little soft time in the next day or so, and then get back up on your high horse, and give `em hell. You can do it, girl!

Another hug?...........Ange.x.

valval

for some reason it is so hard to get people to listen and treat arther right i do hope things get sorted for you soon hydro works great good luck val

dreamdaisy

I hope this meets the forum guidelines. Hi clairc, it's not gone well has it? One can have RA without inflammation - there is another thread about this on this forum. I was 'lucky' inasmuch as when I started having regular blood tests they did show high levels of CRP and ESR but I have never had a positive rheumatoid factor: yon chappie said other things can cause this but did he specify what? My thinking from your post is 'probably not'. It took nine years for me to be 'properly' defined - arthritis presents in so many different ways, I am not surprised you are tired and disheartened. You have put a great deal of effort into trying to discover what is wrong: how about writing to Dr M and saying what has happened? Perhaps he would/could write a letter to those concerned, re-stating his professional view about you. Might that help? I am vexed on your behalf. DD

claircoult

Thanks!

I'm not new here, my old username is clairc but for some reason I never got sent a new passoword despite several requests over the past couple of days so I re-registered.

Unfortunately Palindromic Rheumatism is a sero negative arthritis and CRP and ESR are usually only slightly raised so even if you have PR the blood work looks normal so even though it's a feature of the disease they could use it against me. The same goes for the x-rays. PR doesn't cause joint damage so chances are the x-rays will be normal, which is more fuel for the registrar's fire

I got sent a copy of the letter from Dr Merry and I gave a photocopy of it to the registrar at the appointment today but even though it outlined the test results and gave reasoning for the diagnosis he still disagreed with it.

I really didn't need this at the moment, I'm booked for a hysterectomy on 13th December so I've got to get everything sorted for xmas well in advance and with 3 young kids that's a lot of organising!

I'll try not to worry about it until next week. I just hope the consultant is nicer than the registrar! Fingers crossed eh?

Clair

ironic

Hi Clair,
I am so sorry that you have had this knock back as I know that you thought you were finally getting somewhere. I do not understand that you saw a registrar and not a rheumatologist in the first place.
As you say you have enough to worry about with your op coming up just before Christmas.
Sending loads of hugs’
Lv, Ix

speedalong

Hi Clair,

not surprised you went spare. You have a diagnosis, you were going to this hospital for treatment for that diagnosis. How ridiculous. At least you have an appointment with the consultant next week.

Might be worth you arming yourself with contact details of the doc who gave your diagnosis, just in case. Then new consultant can discuss it with him if necessary.

You do have a lot on your plate at the moment ... s*ds law.

Keeping my fingers crossed for you.

Speedy

julie47

Hi clair

Sorry about your terrible appointment but good for you at speaking back to this person, it must have been hard for you I would have probably broke down in tears. You expected to be treated and was knocked back .
As you say you have enough on your plate with the op in december. I hope the next app you have with the consultant goes well. I will have my finger crossed for you.

Here a big hug (((((((((((((())))))))))))))
take care
Juliepf x

woodbon

Hi I live in Norfolk and I'm treated at the Norfolk and Norwich. My consultant isn't Dr Merry, but I believe she is very highly thought of. The N&N is a top hospital for rheumatology, I believe and the person you saw today is a registrar, although they are good and comming to the top of their career, they are NOT consultants and hav'nt had the experience.

Have a look at the Norfolk and Norwith's internet site, and look at the rheumatology department. You can see all the docs interests, I don't know if it will help you, but any knowledge is power. Good luck, I hope the consultant will be more sympathetic next week. Love Sue

cebeem

Well done Clair for challenging the things you heard today!
How very confusing and frustrating for you!
Like DD for me it was several years before getting a definite diagnosis i.e. from 1985 until around 1992/3....and even now the diagnosis has more recently changed following other symptoms developing or coming to the forefront .
The information you will gather here will help you to reflect and question the symptoms you are experiencing.....this will arm you at appointments to ask relevant questions and offer information to the consultant so that he can work with that very important information which is unique to you.
It is not very professional of them to openly disregard the others opinion, would be best for them and you to keep both options open for the moment.....yet offer their own suggestions delicately and considerately.
I was once given some advice that .......although we know what we are feeling and how we are reacting to things the consultants often do not ask the questions which allow/lead us to give the full picture....and thus we assume they know exactly how we are feeling etc......they don't!! We have to tell them everything and so give them the tools to work it out...............

Hope this doesn't come across wrong..as I know I have waffled a bit there! And I know you are an intelligent lady ......
All I am saying is give them every bit of information no matter how small or trivial it may seem it may just be the piece of the jig saw they need ...also ..write it down keep it and repeat it to everyone you are treated by....they need your opinions and experience as much as you need theirs. Good Luck

skezier

Hi Clair,

Ah I rember you now and sorry you had trouble getting back in. I think a few have had and I was just lucky.

Its so hard to get them to take you seriously at times..... well done though for coming out fighting. I tend to roll into a ball and do nothing....

You could do a letter and attach a copy of the other rumo's letter maybe? It might jump you up the cue.....

I get told to stop worrying as makesaes it all worse but I know its so hard and I think you will be better after the op. You knowkow we will do pocket duties if you need for that don't you?

Hang in there flower..... They will sort you and you will get some treatment. ((( ))) Cris x

frogmorton

Hi Clair

I thought it was you!

I am so so so very sorry - what and awful thing to happen just when you had got somewhere. Sorry you are so upsetb but I know I would be too.

I will be crosssing everything at my disposal for you at your appt.

Love

Toni xx