Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New user, newly diagnosed

Hey Beverly,

You can always do what I do after I have xrays, mri's or myelograms. I wait a few days and then call the records department where ever I had them done and ask if I can pick up a copy. Some place charge patients one or two dollars to make the copies if for personal use, but they give them to you free if you have a doctors appointment coming up and you want to take a set with you.

Anyway, radiologist read the slides and make a report based on guidelines for the area of your body being x-rayed. They use fancy medical words so normal people can not tell what they are talking about. When you took your sheet for the x-rays and mri it probably had "spine" (what ever parts your doctor checked). When you got there you were probably given a paper to fill out with a place where you list your symptoms. Your answers were probably back pain, leg and hip pain, stiffness, muscle spasms, etc...

If you were to read my mri reports and looked up the definitions of the words you did not know, you would possibly come to the conclusion that my vertebrae are full of tumors which would indicate bone cancer. Degenerative disc disease in multiple levels of the spine creating nerve root compression and spinal cord compression.

I have all my medical records since 1984 because my neurosurgeon in Ca told me it would be wise if I kept them for when I changed doctors I could give them copies. I found this very helpful after moving from Ca to NC. Since being back in NC I have had one doctor quit practing medicine and moved to Washington State to teach, my favorite doctor (from the old school) retired in the mid nineties. I found another doctor after he retired with a lot of knowledge on AS and related diseases, who moved his practice to the coast of NC over 4 hours from where I live. The doctor I have now I started seeing at a medical group, she recently moved into her own practice and I went with her.

Doctors order test, x-rays, etc and the technicians can olny tell them what they see. It still takes a doctor to make a diagnosis. As for the radiologist's buddy having AS, what stage is his buddy in, will his buddy's spine fuse totally. AS or SpA affects everyone different and the progression speed is different in every patient. Only your doctor can determine what you actually have.

have a good one,
Brent

Hi Beverley,

Welcome to KickAS. I read your post the first day, however I was in one of those AS induced unsociable moods. I spent a few days reading the AS Kickers stories at the bottom of the main page. That cheered me up conciderably. I would recomend them for great insite and not feeling alone.

Take care. PM me if you want to talk extra.

Cynthia

Hi Brent,
I got the MRI films (I can only borrow them) and took them to my chiro's office so he could see them and show me. There are 3 cervical vertebrae that the little hooks are visibly larger, in a tear drop shape.
The report calls it "mild annular bulging" at C5-6, C4-5, and C3-4. Also it says: At C5-6 There is a central protrusion which does not quite contact the anterior margin of the cervical cord.

Then under Impression it says:
1. Diffuse degenerative spondyloarthropathy as note above. (yes it said "note")
2. There is central C5-6 disk protrusion without central canal stenosis.
This isn't the complete report, but I think it gives the general information.
Only my cervical spine and shoulder were imaged, so that's all I have to go on at this point. The chiro apologized because he didn't have a proper viewer, but it was easy to see the abnormal vertebrae.

You're certainly right about the diagnosis having to come from a doctor. My GP refers to my "back problem" like it's not a big deal. She's more concerned with the liver panel and the pericarditis cause.

I've got a lot of my medical records, and I think I'm going to see if I could get my MRI on cd. One of the imaging offices in town is doing xrays on cd now. It isn't as awkward as the films.

If I get a diagnosis and that radiologist has used incorrect terminology, I may have to go yell at him in person. He won't be the first technician that's been a nitwit!

Thanks,
Beverley

Hi Cynthia,
Thanks for the welcome and the heads up about the stories. I'll know what to do when the "mood" strikes. I do know those days when the mood just won't lift and I want to just zone out.

Take care,
Beverley

Hi,

those vertabrae/changes in your neck are common here, the bit now is to sort out what is inflammatory and whats damage.

Just getting the inflammation under control helps alot with pain and mobility. You getting tiredness fatigue like wearing a tight rubber suit?

Disk and spurs, they do n't like doing operations on SpA patients if they can avoid it, and you are better of going through conservative treatment. Usually nsaids, exercise, steroids usually a short oral course, and then needles.

The techie is a radiographer, the radiologist usually sits on the back and they write the reports, he's a Dr with some medical training but then they branch off into reading films and it is quite an art. Probably very boring as well. You are lucky he could pin it to SpA many can't.

Diffuse is commonly used to descibe a pattern or effect on the films and degenerative is also commonly found is older people or with arthritis.

Beware of Dr.s who underestimate this condition, my experience is you are in for a hard time with them. It's far better to start treatment now, You should see a rheumatologist who is good with SpA not all of them are. Much can be changed early in the disease, and the best practice is start doing the good things now.

David







IBD=It's Been Dreadful

Hi David,
I'm not getting that kind of tiredness, but don't have the energy like a couple of years ago. I agree about beware doctors that don't take this seriously.

Beverley

The visit to the Derm was moved up to this morning. Apparently I don't have psoriasis. The shingles are what they are, he gave me a prescription for some creme to try, I have to go get it.

Beverley