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

Hi Everyone,

I'm not too sure what to think at the moment, so I will probably go get some sleep first and then let the news sink in.

It turns out my mystery nerve problems that I have complained about for years actually did/does have a DX. Stenosis... in both facets and spinal canal (including bone spurs in both), especially lower thoracic and upper lumbar. I also have another compression fracture, a few bulging disks, and spinal edema (never heard of it), all of which I also haven't known about until an hour ago. This is all from one doctor's scan, so it makes me wonder what my other doctors haven't told me. This report was from 2/08, before I got the metal put in my back (I think).

This report also told me that my upper thoracic spine has 80 degree kyphosis. 90 degrees would be a 'right angle' wouldn't it? I already knew I am curvy on top, but having a number for once makes does help paint a picture for me (being that I can't see myself in a mirror).

I already have well-advanced AS , but adding all of this on top of it makes if feel like super-duper AS.

At least now I have a reason (a real DX) behind all of my nerve problems... not just 'a little narrowing of the spinal canal and facets', but a bigger problem with stenosis and spurs. I knew I wasn't exaggerating my nerve problems like they made me feel like I was. The bulging disks could explain the unusual joint pains I have been having too.

Oh and by the way, I have not been able to see the pain management specialist yet, because my doctors are having problems relaying my medical records. This is why I have this particular medical record with me, so I can deliver it myself. I'll wait a few more days to see if anything else comes in the mail first, then make an appointment again.

Anyways, it's all news to me.

Happy Holidays,
James

Hi James,

Glad you could finally get diagnosis... not sure as you say why it took so long. Hopefully some good can come of it.

Tim

Oh James,

My heart and prayers go out to you.

D-

sometimes it takes a little while for things to sink in, but then they do so we can regroup. just remember it doesn't change the disease progression, just gives some (probably much needed) explanations. sorry to hear the level of spinal involvement, but glad you finally got to see the report.

Oh James you are one tough soul. Glad you got some info that reinforces that you were right and things did have an explanation derived from changes within your body.

hey, glad you've got proof that it's not all in your head! Heck,,, it's all in your back!

Oh wow James. That sounds so painful. And it doesn't help that you weren't even told what it was all this time! Why the mystery? Wow, that would make me mad knowing that I was in pain, asking for advice, yet my doctor wasn't dishing the truth.
Hang in there. Thinking of you.

James,

WOW! Im glad that you finally got to see the info. I agree with the others and Sue just kind of take it all in.

You know we are all here to support you.

Hugs,

Lisa

Hi Everyone,
I'm back lol. Okay, I slept it over and I know that nothing has changed. I'm looking at this as all expected possible problems to happen when a person has had a fused spine for a number of years. It really doesn't surprise me at all.

Although I feel that any one of my doctors should have spoke up and told me about what was found instead allowing me to spend every day wondering if I have multiple sclerosis or some sort of neuropathy. They know it too, because I talk about these neurological problems to them. I'm more upset about the stenosis part more than anything else.

I see I have a number of replies that I haven't actually read yet, so thanks for those in advance. I am going to read them in a second. I had some unexpected things to do after I woke up, and I had to do them first, but I wanted to get over here asap afterwards and say what I wanted to say before I lost my train of thought.

Take care,
James.

Hi Lisa,

I am thankful that I did get to read it. If my doctors didn't have trouble sending medical records back and forth, I might not have been able to find out for a while. [ Thinking to myself now... that I almost didn't read it yesterday because I was too preoccupied with something else. ]

Take care,
James