Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Rheumy appointment today

Well, after 11 months of pestering and prodding people, I finally got to see the rheumy today....and what a waste of time it was!

He said he couldn't find anything wrong! I explained all the symptooms I'd had - heel pain, back pain, ankle pain, pain sitting down, neck pain, shoulder pain, hip pain, IBS symptoms etc. etc. His opinion: "I see hundreds of people with backache every year".

I pressed him on whether he really considered that simple mechanical back ache could explain all the other symptoms, his view "If you had an infection of the spine you'd be in hospital". I also explained that while I could bend over today and raise my legs, I wouldn't have been able to do that last week when everything was very flared up and I could hardly get out of bed. His opinion: "Well, the weather's better this week which helps".

I feel thoroughly depressed. It's taken so long to get to this point and after everything that's been wrong over the past year, for someone to just turn round and say they can't find anything wrong seems ridiculous. I mentioned AS, and he said it wasn't something he'd consider for someone my age (26 male) unless I'd had the back pain for at least 8 years previously.

I really don't know what to do now. I could seek a second opinion, but the respone may be the same, plus it would probably take another 3-4 months. In the end, they're just not interested. They're not bothered about listening to you (even though I'd taken everything in written down so I didn't forget anything) or understanding how these things affect your life.

Grrrrrrrrrr...!!!!!!! I feel like giving up now!

David

Hi David,
I'm sorry your appointment turned out like his. Didn't you have any xrays or blood tests. Is he only diagnosing on physical examination. The man sounds like a pratt. You might not have AS but he shouldn't dismiss your pain and symptoms like that. Get a second opinion.

Kevin

I had some bloods done about a month ago, and he said they all looked normal. He has ordered an MRI scan, but only because I pushed him to do something rather than just turning me away with nothing; though, in his words "You know, it won't show anything up".

Well have the MRI and see what it shows. The thing with AS is its so very slow to develop so its possible that nothing much will show up and if that's clear and you don't have b27 blood then I don't know what you can do except get a second opinion.

Kevin

Hi David,
Please don't give up, seek another opinion. You will find some one that cares. It's hard enough to live with without not being diagnosed and receiving proper treatment.It should show up in a bone scan, that is how I was diagnosed, it was a sweet moment - I thought was nuts!
Cheers
Debra

David, get a second opinion. Dear god that rheumy is a crackpot!!! Wouldn't see it in a 26 year old male unless he had back pain for 8 years, my a$$. This rheumy, for whatever reason, doesn't seem to have wanted to actually help. Did he do any tests? Did he see x-rays? What about blood work? Did he do anything pro-active? Sure sounds to me as if he didn't. By all means, get in a queue for a different rheumy.

Hopefully, someone in the UK can suggest one.

Hang in there, David. Sometimes it takes massive amounts of tenacity and perseverence. In the meantime, you have us.

Hugs,

Did you have a pain/stiffness journal detailing when, where and how bad the pain is. If not, start keeping one today. My journal made all the difference in getting my Rheumy to take my problems seriously.

Donna

What tests exactly? What were the exact results?
Never ever just go by the doctor saying that they all look normal. And ask for copies of the results always.

BTW, you had better insist that the MRI is performed with contrast and specifically looking for inflammation. X-rays are usually used to see damage.

A basic blood workup should include: SED rate, CRP, ANA, RF, and HLA-B27.

I would get a 2nd, 3rd, 4th...etc...opinion until they figure it out correctly.

what a lot of others have already said:

don't give up
see as many doctors as you need to to get the help you need
come here for support

not only have i gotten moral support here, but learned a lot, which enabled me to find a rheumatologist who understands undiff spondy.

it can be a long row to hoe, and it is so easy to feel like giving up, but of course we can't, and i know you won't.

if only that doctor could live a day in your shoes.