Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I read my medical record... surprise! surprise!

Hi Megan,

My pain levels are controlled for the most part (on most days). I can feel the nerve problems 24/7 but most of the time they feel mild. When I my AS hurts more the nerve problems also hurt more, so half of it must be inflammation related.

Take care,
James

LOL... Trudi,

Either my doctors don't actually read my medical records, or they are good pretenders when they pretend to not understand my symptoms.

Take care,
James

Hi SteveC,

Thanks for the reply. If I wouldn't have read the medical record, things would be just the same, but I still would have my suspicions. Actually... it's relieving to have read the record because the guessing is over now. I wish I would have known sooner though.

Hi Sue,

Yes, regroup is what I am going to do. Knowing this also tells me how to handle my conversations with my doctors. That's a plus.
Instead of having to describe what I feel like, I can tell them what it 'is' that makes me feel like. Did that make sense? Let guessing on my part is less guessing on their part... I guess.

Take care,
James

Hi Donette,

I'm not sure I know how to answer this one...
I think I should have mentioned that I am physically doing okay considering the number of things I have going on. My body's flexibility is less than poor, but I don't think I hurt more than the average ASer. In fact I hurt way less than I used to.

Thanks for your reply.
James.

Hi Tim,
A year or two ago, I was supposed to get a myelogram to check for these things, but they couldn't do it for me because of my posture, so I was sent home. I also saw a neurologist who felt he had to dismiss me partly due to my arthritis, so my diagnosis from him was incomplete.

I don't know, maybe my doctor felt he needed more info about my condition before he could tell me what the DX was.

Take care,
James

"Why the mystery?"
Sorry I missed that part.

I say mystery because it is something I have always complained about to my doctors, but they were unable to provide a reason other than 'just arthritis' or 'just inflammation'. It has been going on for about 5 years now. At one point a doctor did tell me about narrowing facet joints and spinal canal, but the person refused to elaborate... 'just arthritis'.

Thanks for the reply.
James

Hi James.
Lucky you got to read it. I think Doctors have a habit of not telling us things like its there little secret. I dont know why its our body and we have a right to know every thing going on with it.Its good you have these answers now helps you to move on.
All the best and happy Christmas to you and your family.
Kevin

Thanks Kevin,
Judging by your reply, it sounds like you noticed this secrecy type of thing happening to you too. It makes me wonder if they would do this to life and death situations too. Scary thought!

Merry Christmas
Take care,
James

Yes James Ive found out things I havent been told till long after.
Some Doctors do this with life and death situations Im sure.It allways used to be that way in the past with the old Doctors thinking it was better for people not to know and I must say that I think in some cases it was the right way to go. I know my father was not told in the 60s that he was dieing from Cancer and he went on a long time. Where as my sister didnt last very long after she was told.I think some people just give up when they Know.
Kevin