rheumatologist my foot!

skinnylizzie

Hi, sorry, it's a bit of a rant, but I don't know what to do.
I have been under the care of Professor Kevin Davies for about 18 months now, and he told me last time that I had an inflammatory sero-negativev arthritis and that come spring (ie now) he wanted to start me on methotrexate, or in his words "a more aggressive form of treatment".
I was due to see him on 29th march and rang up last week to see if I could see him any earlier and was told that I had been put on another consultant's list and that my appointment was today.

I saw this 'consultant' and he basically spent 30 secs looking at my file, and examined me, and pressed my 'pressure points' (I knew what he was aiming at) and said do they hurt? I said no, it is the pain actually IN MY JOINTS not my muscles. he has turned around and said that he is 100% that I have fibromyalgia and not inflammatory arthritis because nothing has shown in my bloods. well duh, isn't that what sero-negative means?
He has completely contradicted what the Professor (who has many more years experience than this bozo) has said, and basically told me that the Professor is wrong. I don't know what to do because the professor has a waiting list until sept on the NHS and I've been ringing around trying to get an appt with him privately but can't find which hospital he works at. In the mean time, I am off uni, in agony, exhausted and worried that there could be damage being done with this idiot doctor diagnosing me with Fibro-bearing in mind that the Professor said I probably have a touch of that too, but it is not the main thing!
Professor Davies wouldn't push for me to go on MTX unless he thought I needed it surely? I'm also on etoricoxib and Hydroxychloroquine which have helped. And this bozo doctor wants me to have an MRI to completely rule arthritis out, but if I am in the early stages then sometimes it won't show anyway?

Help! (sorry for the long rant)

tjt6768

Could you ring the hospital switchboard and ask for a contact number for the main man's secretary.. Explain the situation to her and how upset and frustrated you are, and could she please get you an appointment to see him, even if it means going on the cancellations list.. Not ideal I know but worth a shot...
These idiots believe they know everything just by seeing us for five minutes.. :roll:

Best of luck

traluvie

I agree with Tony, ring the secretary and speak to her.. My Rheumy secretary is brilliant. had to ring her today as they changed my appointment from april till july, was not happy, appointments had basically cancelled the appointment as Rhemy was off that day and slotted me in to the first available appointment, the secretay apologised and scheduled me in for end of March... was very appreciative.. might be worth a shot..
It must be horrible to be told one thing then something totally different..
My bloods never showed anything up but my rheumy was sure my symptoms were of inflammatory nature he sent me for a bone scan, this showed up inflammatory arthritis... maybe the MRI would work the same and show it up, i'm not entirely sure.. You could maybe ask the helpline, see if they can help..
Let us know how you get on.. xx

frogmorton

Oh Skinny

Not a fun appointment at all. I am so sorry you had such a dreadful experience with the consultant.

If you can afford it a private appointment is very often the fastest way to get help.

Good job you knew what he meant by pressing those 'points' l wouldn't have known :???:

can l ask did you go to your outpatients appointment alone? I never do this as it helps me say what i want to say and also makes me feel more confident.

I do hope you can get yourself an appoitment with teh professor very soon - please let us know how you get on.

Love

Toni xx

julie47

Hi skinny
So sorry you had a rubbish appointment.
As for finding out about the profs private clinic, if the hosp switch board cant help, ask your gp. He may have his number.Or google him.

I hope you get intouch with him and get your appointment soon.

Take care
juliepf x

tillytop

Hi Skinnylizzie

I am sorry you had such a rubbish appt today.

I think that you are right that you need to see the prof again as soon as possible to get his take on things, even if it means seeing him privately as you have suggested. You could also try putting your concerns down in a letter to the prof and asking to see him as a matter of urgency.

From my own experience, I think the best way to find out about his private clinic is to speak to his NHS secretary and ask for the number of his private secretary so that you can call direct.

I really hope you can get to see the prof again soon.

Really good luck. Am thinking of you.

Tilly xxx

suzygirl

What an awful appt, do these doctors ever think of the impact it has, when they contradict each other?? There is no way you would be on plaquenil or offered methotrexate if you just had fibro.

Writing to the prof or speaking to his secretary is a good way forward. I hope that works out well for you.

Rant away, you deserve to!!!

skinnylizzie

Hi Everyone,

thanks for your kind messages!
Just an update really...I spoke to the Prof's secretary but unfortunately he doesn't do private practice :sad: She said if he did he would be inundated!! He's a very popular chappie!

Anyway, I spoke to the lovely Rheumy nurse today and she said that they have put me on the cancellation list to see him, and will send out an appointment for September in the mean time to see the Prof, so at least that is something!

I have to have an MRI and some of my bloods have come back- Complement C3 and C4 a bit low, so I guess it's a case of wait and see, and ''get me some more pain relief quick smart please!!!!''

Lizzie

tjt6768

At least you are on the cancellations list eh? I know september is a long way away... :roll:

Hope you are ok in the meantime, I don't know what those levels mean but hope you get the pain under control..

Starburst

Hi Lizzie,

Glad you've got an appointment coming your way. I'm sorry that the last guy was unhelpful. Is your GP good at sorting pain relief?

Sophie x

skezier

Hi Lizzy,

hell that's a bad appointment..... My eyes are shot to bits tonight so i may have read your post wrong but has he taken you off the mtx?

In a way the mri is a good idea as it would show up inflammation around the joint in the fluid even if its not effecting the joint its self so maybe that could help you? Its such a conflicting opinion and sadly these people are about..... such a shame you had to bump into one.

Good that you are on the cancellation list flower and I so hope you get to see the prof soon. its often the case that the really good ones don't do often do private as well.....

Lizzie you might have said and I am sorry if you have but ok so he thinks you have fibro... what he given you for help/pain control? Its so wrong that you have been left to be in pain and totally confused by him....

They kinda told me i have fibro.. Well I have an understanding with them that they don;t actually tell me cus i have enough conditions now but my rumo had already put me on pregabalin long before and he kinda said I was on the right drug for the unnamed one and people here with fibro also have found it helps.

Some use gabapentin but the pregabs are said to be better and have less resistance as they are the 2nd generation. Might be worth asking you gp for some help in the interim

I hate people being left in pain but that one you might get some help with before you see the prof?

Hang in there flower and don't let a bad appointment effect you as you will be sen by the prof and hopefully soon. Leaving you a ((( ))) and a hope. Oh mice to meet you cus I not bumped into you before. Cris x

julie47

Hi lizzie

Glad you have now got an appointment to see the proff....september is quite a wait so i hope you get a cancellation.
I hope you get the pain relief you need soon.
take care
juliepf x

skinnylizzie

Hi Cris,

Thanks for your message! The Prof wanted me to go on MTX but I was reluctant late last yr as I was at uni and was worried about bugs and viruses bobbing around (I worry too much!!) so said I would probably try it in the spring, but the the Prof got so booked up with his patient lists so they transferred me to this other bloke :roll: So I just need to wait until I see the Prof which hopefully won't be too long!

It's funny you should say about the Pregabalin, I went to see the GP today and she suggested I try it..so I'm giving it a go! Looking forward to hopefully getting some restful sleep!!
And got an MRI booked for next month so we'll see.


Thanks also Julie and Sophie for your message

Lizzie x

tkachev

There should have been a message on your file mentioning starting MTX. That is the trouble when you see different people. Who can you go to see to sort out your pain relief. Can you go to a GP? You need to get cared for soon.

Elizabeth

barbara12

Hi Lizzie
I am so sorry you are being messed about, I do know some of what you are going through.
I do hope you get a cancellation very soon, and hopefully some proper treatment.
Good Luck with everything
Love
Barbara x

frogmorton

Well done lizzie for being assertive

September seems a long way of just now, but if you can get something from teh docs for now It will help you no end

Love

Toni xx

skinnylizzie

Hi everyone,

just a little update...I've been pestering them at the hospital again and the Prof has apparently written to me saying he'd like me to see his registrar in the meantime before seeing the Prof at the end of sept-hopefully not the same bloke lol. So that's nice he's taken the time to write.

I have still got these low complement levels and asked the Rheumy nurse what they meant (I know they can have something to do with Lupus) and she said they are Lupus specific...but all my other bloods, ANA, RF etc are normal which is a pain, so still no nearer. I don't think it's RA though, no significant overt inflammation which I know a lot of people get.
Maybe it's something undifferentiated connective tissue-y!..

frogmorton

Thanks for the update SkinnyL

Shows that grim determination can pay off!

I hope they at least TRY to get to the bottom of it for you and really think they will now as the prof will be after them!!!

Well done

Love

Toni xx

jennylynn

Hi Lizzie,

probably a long shot, but i wonder if its worth going back yo your gp and seeing if you can get another opinion by referring you to another hospital? (whilst waiting for your appt with the professor). They have this 'choose and book' system now so you pick which hospital and ultimately which specialist you see in your area. Not sure if this is a nationwide thing or just in lancashire, but i was basically given a username and password for an NHS site and chose myself online which hospital and which appt i wanted. Also meant if i wanted a quicker appt i could see what was available at other hospitals. Might be worth a try? I moved from burnley general to wrightington using this method. I havent looked back since!
Sometimes appts can be so soul destroying. I've changed rheumys a few times (have moved around a lot!) and i would travel back to wrightington from the other side of the world if i had to

Jennyx

skezier

Hi Lizzie,

Just wondered how you are getting on with the pregabalin flower?

hey don't forget next month we do half decent pocket duties if you need us to for the scan.

Hope things have improved for you a bit and leaving a ((( ))) Cris x