What’s the longest people have waited to have... - Pain Concern

Pain Concern

38,120 members11,738 posts

What’s the longest people have waited to have a second appointment from Rheumatology

Itsallinthehips profile image
15 Replies

I’m in 8 months, and considering they apparently talk about me at most of their weekly meetings still nothing is being done. I had an MRI 5 weeks ago and still know nothing from that.

Everyday my situation worsens and I get fobbed off with “oh yes he will do it next week” “oh he’s on holiday” (who going on holiday every month lol)

I’ve now got PALS involved to see if they can help speed things up because lying in bed all day everyday at 27 is not how I want to spend my life especially with a four year old

Written by
Itsallinthehips profile image
Itsallinthehips
To view profiles and participate in discussions please or .
15 Replies
Cookie16 profile image
Cookie16

Hi, you sound like Me, i had herniated disks in L5&S1 in lumbar spine, that was six years ago and i never got an mri xray or nothing, finally after begging to be sent to a rheumotogest i finally saw one on 18th of june, she took bloods and xray for my neck and lower back, she said if when i get the xray results then i will send you for an MRI and with that i got a letter in post for an MRI on 31st july, i had that and it was just for my lower back, and i have just had my 2nd follow up app with results of the MRI and its showed a serverly hernatied disk thats pushing and crushing my nerves in spinal cord and that i also had DDD which is disks in back are degenerating so i was right all along

Cookie16 profile image
Cookie16

Where is your pain? X

Itsallinthehips profile image
Itsallinthehips in reply to Cookie16

Ouch, why didn’t they send you for scans before seeing the rheumatologist? Is th consultant better with you now you know the cause etc?

This is my third MRI but they all show slightly different things. It’s my left hip and thigh it’s horrendous.

I’ve spoken to PALs now and they have said they will be talking to my consultant today as it’s outrageous how long I’ve waited for this and because all of this has taken them so much longer my referral to London hospital got put back so much I should of already done it by now.

Just so frustrating how am I meant to have a life how is my child or anyone else in my life when I literally relie in everyone to do everything for me and I’m not even 30 yet

dtech profile image
dtech in reply to Itsallinthehips

Did you know there is an NRAS health unlocked website? Great for us with RA. Lots of advice and phone helpline

Itsallinthehips profile image
Itsallinthehips in reply to dtech

What is RA sorry? Thank you

dtech profile image
dtech in reply to Itsallinthehips

Rheumatoid Arthritis 😃 which I’m assuming you have if you are seeing a rheumatologist😉. And the NRAS IS THE National rheumatoid arthritis society. Very good organisation for help. Assuming you are in the UK of course. Sorry if you aren’t. But the HU site is open to all

Itsallinthehips profile image
Itsallinthehips in reply to dtech

Oh right, no I don’t have that they think I’ve got hyper mobility syndrome and a camm impingement in my hip, but it’s taken a rheumatologist to see that

But thank you anyway

dtech profile image
dtech in reply to Itsallinthehips

Oh right.😃. Didn’t know rheumatologist did that. Learn something new every day. Hope you get sorted soon.

Itsallinthehips profile image
Itsallinthehips in reply to dtech

What do you mean did that?

No one else could figure out what was wrong until I met my rheumatologist, he’s a good consultant just takes years to do anything about anyone.

Thank you so do I but I can’t see it happening any time soon

dtech profile image
dtech in reply to Itsallinthehips

I thought rheumatologists just did errr rheumatoid arthritis😃. Must ask my consultant next time I see him. Mine is a nice guy too. Luckily I had private health insurance when I first got it so was able to get diagnosed quickly. Then I switched to nhs for long term care but still saw the same guy.

Itsallinthehips profile image
Itsallinthehips in reply to dtech

That’s nice you could keep the same doctor.

Your one of the lucky ones then lol

Tretre profile image
Tretre in reply to Itsallinthehips

Hi I suffer really bad with osteoarthritis it's in most of my joints and have degenerative disc disease and Bone Spurs groin on my spine and I have scoliosis and I'm under the rheumatologist for this and the pain clinic and the waiting time is a long time now with the rheumatologist. The rheumatologist cover a lot of pay now the joints and inflammation So hope you get to see someone soon

helixhelix profile image
helixhelix in reply to dtech

No...they do a whole host of things that fall under musculoskeletal system and connective tissue diseases, from carpel tunnel syndrome to lupus.

Cookie16 profile image
Cookie16

Sorry i ment to ask what peoblems do you have thats causing the pain x

Itsallinthehips profile image
Itsallinthehips in reply to Cookie16

They aren’t sure that’s why I’ve thrown around from consultant to consultant lol but they think a few different things, I’m just waiting for this appointment to see what’s going on x

You may also like...