NOT GOOD!!!

deedeeitsme

Went back to rheumy for the results of my mri. The rheumy I saw on my first visit had left the hospital to work abroad so I saw a different one. Well, the first rheumy saw inflammation of the sacroilliac joints, sclerosis and other irregularities on the xray which is why he ordered the mri. My mri came back "ok" the other rheumy told me and said because of this she said I have fibromyalgia. I asked her about what the other rheumy had seen on the xray and she totally disregarded everthing that the other rheumy had said without even looking at the xray. I didnt even get to see the mri report, I asked her for a printed copy and she would not give me one. My sacroilliac is definitely the problem, that is where my pain is every day. Yes I get reffered pain in other places but it all stems from the sacroilliac joint. How can she disregard what you can obviously see on my xray just because the mri came back ok!!! Don't know where to go from here. Do I ask my gp for a second opinion or do I give in? The pain is getting too much now and I am desperate!!!
Sorry for rant but I just feel like I'm going backwards.

x Dee x

dreamdaisy

We are always at the mercy of doctors' opinions. The same evidence of joint trouble can be interpreted completely differently by two or more who become involved with us and our treatment, which does not help us. We are the ones at the 'sharp end' so to speak, and it can take a while to find someone who is interested enough to listen to us or be polite enough to consider another point of view.

The first rheumatologist I saw told me there was nothing wrong, despite a hugely fat left knee. The second one told me I was orthopaedic's pigeon and not to darken his door again - I got the last laugh on that and stayed as his patient for a coupole of years. The third one has been an absolute star - I knew nothing of her when I asked to ne transferred onto her list but it turned out to be one of the better decisions of my life. All I can suggest is that you keep fighting your corner, you need a proper diagnosis rather than the 'I don't know what it is so we'll call it fibro'. Take a little time out to re-group, then enter the fray again. I wish you well. DD

deedeeitsme

Thank you so much DD for taking the time to reply. The problem I'm having at the moment is getting to see a gp/rheumy more than once. I have now registered with a doctor that is well established in the practice so that I can at least see the same person more than once. I am seeing this doctor on the 21st of this month to see where we go from here. The consultation letter was actually addressed to this gp so hopefully he can shed some light on why, when it is blatantly obvious that there is extensive inflammation around the sacroilliac joint, she just disregarded this. I was actually so pleased when you could "see" what I had been saying for months and he was actually saying that he believed me but now I'm back to square one. I am not belittling fibro in any way and maybe it is a secondary to whatever is happening with the si joint but I know the si joint is causing me the pain I am suffering now. I actually made myself go to a car boot sale with my friend this morning but we had to sit and have a coffee twice because my back was on fire and so painful. When we decided to come home I could not get in the car the "normal" way I had to reverse into it and physically lift my legs in with my hands because I couldn't raise them!! Anyway I will keep on fighting for as long as it takes but it's so draining and frustrating at the mo.

x Dee x

dreamdaisy

I do empathise: pain is draining and everything we do takes us more effort than is really fair (pointless concept, fairness, isn't it? ). I now wait to see my preferred GP, even if I have to ring three days in a row to get an appointment with her I will as I appreciate the continuity. I am a familiar face at my rheumatology department, I see the same consultant twice yearly and one of four nurses once every three months or so, but this has taken a while to establish. I remember the frustration of the early days when no-one appeared to take any notice, despite my knee inflating like a balloon! Grit your teeth and hang on in there, things will get sorted in due course and don't be afraid to politely kick up a fuss every now and again - we'll back you all the way! DD

barbara12

Hi Dee
Like you I had an MRI of my lower back, my consultant was wonderful I just couldnt believe my luck, only to be told he was retiring , I went back for my third appointment only to be seen by a lady who I can only say was ignorant and had the couldnt care less attitude, so I really can sympathise with you, I sent a letter of complaint...only for it to be ignored...so I sent another one I have only just heard off them and it is over 9months ago.
So I would say you ask for another opinion, and you have every right to see you results.
I do hope you get the help you need, I havent quite got there yet but I am determined to
Wishing you well with it all x

deedeeitsme

That's exactly how my last appointment was Barbara....she really didn't care. I actually showed her some swelling on my ankle and she said that because my swelling is just above the outside ankle bone (the one that sticks out like a nuckle ) it wasn't my ankle so I said ok then but what is causing it. She actually said it could be my weight, I am nine stone wet through!!!! Unbelievable x Dee x

barbara12

Hi Dee again
Just to say till I came on this forum around 3 years ago I would never had complained, it was just alien to me...they are the consultants and you do has they say, but with the help of the people on here like I said I have put two complaints in, and I am going to my GP next week to get copy's of all my scans and xrays has well has the letters form the consultants.
Now my GP an be really hard work but I know I have a right to see my notes, sorry I am going off on one here, but believe me if I can do it then so can you,and don't forget they get paid good money to look after us
Good Luck we are all behind you xx

deedeeitsme

Thank you again Barbara. It's nice to know we are not alone. I feel a bit calmer now but starting to flare again, so much pain today, taken more pain dullers than usual but not getting much relief. Thank you again your input and support is really appreciated x Dee x

bubbadog

Hi Dee, definatley have a chat with your G.P if you have a good relationship with them and see if they agree it would be in your best interest to get a 2nd opinion, and see what comes of that. And hopefully you will get to the bottom of what is causing your pain. And then you will hopefully get a good pain management course set up. Sending you a big (((HUG)))