Another bad Rheumy appointment

melbland

Hiya

I will warn you all from the start - I'm going to have a bit of a moan!

I saw my Consultant again the week before last and was there all of 5 minutes. I have seen him 4 times now, and the last two times I have seen him he has said the same thing.

Bit of background - I have seronegative inflammatory arthritis which did, at the time of first consultation and thus diagnosis, only affect my hands, my right foot occasionally and my left knee occasionally. I have, since then, had my arthur rapidly spread and I hurt everywhere quite badly - including my jaw and inside my heels (plantar faciitis?).

Anyway - I did, at the second consultation, try to explain that things had gotten a lot worse and it was spreading but when I showed him my ankles, his remark was "they are not swollen".

After that rather failed attempt at explaining my current pains, I knew he was not bothered and have not never tried again since.

I have depression which I have had for a number of years, but it is currently under control. However, his remark to my "how are you feeling" was that it was my depression that was causing my pain, and my pain makes my depression worse. In other words - it's all in your mind - quite literally.

He has said to me also that there is no "objective signs that there is anything serious going on" which again suggests it's all in my mind. However, he has not requested any x-rays/blood tests since June 2007, and this x-ray was of my chest.

I am at a loss as to what to do now. Do I complain to my doctor about it and get referred to another specialist or do I just sit it out and wait for things to continue as they are. I am worried that I have got some kind of damage/problem with my body because my shoulders/neck are badly affected and I really don't know what to do.

Or - should I speak with my GP and ask HIM to send me for x-rays/blood tests etc??

If you have read to the bottom here - thanks and well done!!

Mel x

sharonjax

Hi Mel,
What a nightmare! It's quite spooky reading your post as your situation is very similar to mine. I too am sero neg but my original rheumatologist just did'nt want to know. I had 2 appointments with him and decided enough was enough and went back to my GP for a referral to a different hospital.

I had my first appointment with new rheumy in October and OMG the difference was unbelievable, he actually cared! Had lots of bloodtests and xrays done of hands and feet. He explained everything and I had a steroid injection. Still got all the aches and pains and bendy fingers but the most important thing to come out of that appointment was that he believed me and didn't make me feel like I was wasting his time. I actually thought I was losing my mind at the start of this arthritis business.

My advice to you is ask to go elsewhere, trust your instincts, you would nt go back to a hairdresser that ruined your hair so don't stand for second best in something as important as your health. It might take time to find Dr Right but they are out there. Mine is an hour away but I don't mind as I only have to go every 3 months and it's soooo much better than my local hospital.

Sharon

eugeneg

melbland wrote:

Hiya

I will warn you all from the start - I'm going to have a bit of a moan!

I saw my Consultant again the week before last and was there all of 5 minutes. I have seen him 4 times now, and the last two times I have seen him he has said the same thing.

Bit of background - I have seronegative inflammatory arthritis which did, at the time of first consultation and thus diagnosis, only affect my hands, my right foot occasionally and my left knee occasionally. I have, since then, had my arthur rapidly spread and I hurt everywhere quite badly - including my jaw and inside my heels (plantar faciitis?).

Anyway - I did, at the second consultation, try to explain that things had gotten a lot worse and it was spreading but when I showed him my ankles, his remark was "they are not swollen".

After that rather failed attempt at explaining my current pains, I knew he was not bothered and have not never tried again since.

I have depression which I have had for a number of years, but it is currently under control. However, his remark to my "how are you feeling" was that it was my depression that was causing my pain, and my pain makes my depression worse. In other words - it's all in your mind - quite literally.

He has said to me also that there is no "objective signs that there is anything serious going on" which again suggests it's all in my mind. However, he has not requested any x-rays/blood tests since June 2007, and this x-ray was of my chest.

I am at a loss as to what to do now. Do I complain to my doctor about it and get referred to another specialist or do I just sit it out and wait for things to continue as they are. I am worried that I have got some kind of damage/problem with my body because my shoulders/neck are badly affected and I really don't know what to do.

Or - should I speak with my GP and ask HIM to send me for x-rays/blood tests etc??

If you have read to the bottom here - thanks and well done!!

Mel x

Hi Mel,

I've just been to see my Rheumy this morning (I put a new post on here earlier). Whilst it was in and out in 10 minutes he listened and asked for my in-put, he always does. I've been seeing this chap for just over a year now. When my original Rheumy retired I feared I was falling into a gap and sure enough got some wrong diagnosis completely, but as I say I've been lucky with this guy.

Don't be afraid to go to your GP, I always have, get a second opinion.

All the best,

Eugene.

madwestie

Mel, I think that you should speak to your GP.
I have sero negative rheumatoid and was lucky enough to see a very good rheumy who has put me on Methotrexate and i am feeling much better. I just about walked in on my 2nd appointment and the rheumy said goodness i think we should give you an injection. At my local hospital they do a disease activity score which involves them feeling all you finger joints and asking you to give a pain score and they look at your esr reading and that gives them a better overall idea of how things are.

i was advised to keep a diary for two weeks making a note of how much pain i was in and what i had trouble doing morning, lunch and evening. If you do this and take it to your gp and it should help you to explain your symptoms.

woodbon

Sorry, sounds like you're having quite a time of it. I think if you have a good or even decent relationship with your GP, it may be you could talk to him/her about your condition and the hospitals reaction to things. They may be able to arrange tests for you at the practice, :?: I'm unsure if they can as you've been refered to a consultant, but I am pretty sure everyone can have a second opinion. If you do speak to your GP, I'd try and be calm and factual about how things are, let them know you're worried but try not to get angry :x at first, anyway. I know I often shout first and ask questions later, but I have sometimes found this is'nt the best way for me because I get upset or say too much and have to apologise :oops: . Also, most docs I've seen, and thats far too many :!: start the converstation by saying "How are you?" and I always say 'Fine' :!: So maybe its just an opening expression of your consultant and not a comment on your mental state Anyway, I've waffled on for long enough. Best wishes, and I hope you soon get some answers. Medics Ohhhhh. Love Sue xxx

frogmorton

Hi Sue
Nothing for me to say here - the gang have said it all. Go to GP get 2nd opinion!!
I really just wanted to add my support - this is NOt good treatment
Take care
Toni x

avalon

Hi Mel

Exactly the same thing happened to me last week!!! I was in and out in 5 mins. flat!!! So annoyed!!! Anyway I went to see my GP today and she too was not a happy bunny to say the least!! She is now refering me to another consultant, so I would agree with everyone here, go and see your GP!!

Janetx

lindalegs

Well Mel, the others have said it all and I love Sharon's comment about the hairdressers - all I can say is 'hear, hear' and go to your GPs to be referred to another consultant. My Rheumy is absolutely wonderful so there are really good ones out there.

Good luck.

Luv Legs

magenta

Hi Mel,
I'm sorry you're having such a bad time of it. It sounds alot like my experiences with rhuemys. I won't go into it in detail-take too long I have sero-negative arthur too and maybe fibro. Only recently been diagnosed with OA of jaw-not nice and Temperomandibular Joint Dysfunction, the latter contributing to the OA.
I'm going to see my fourth :shock: rhuemy on Monday. I got this referral via an orthopaedic surgeon ( have probs with knees) and he was surprised at lack of care I'd received. I think as soon as sero-ve is mentioned, they don't bother (with me anyway!) with blood tests etc because of lack of RF. I last had bloods taken a year ago. Whenever I tell drs about my pain, which is everywhere, they too say 'well it's not swollen'! So what? I'm sure even people with RA don't always have swollen joints all the time (correct me if I'm wrong though :? ) I'd been complaining about jaw for years, never taken seriously, until my dentist of all people referred me to a specialist. Cut a long story short, get a second opinion or a third!
Take care,
Magenta x

PS I also have pains in feet :?

jeannie2

Hi,

Isn’t this typical! Glad you had a moan and hope you feel better for getting it off your chest.
Most of my consultations over the years have been the same. Do go and see you GP – see if you can see another consultant. It’s better that your condition is controlled as soon as possible to prevent joint damage.
Jeannie