Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Results Question

I had this Nuclear bone scan a long time ago 01/2010. I wonder if I could have got more help at the time than what I was getting, based on these results. I didn't get a DX of AS till well after a year and more damage shown on tests. Now over a year later I have breathing problems,nerve damage and the like.

Technetium 99m Methylene Diphosphonate

Flow and Blood pool appear unremarkable.

On the delayed Images, there is a mild increase in activity which is seen at the left L4-5 facet joint area, right L1-2 facet joint area and slight degree as well at L2-3 and L3-4 bilaterally. There is also a mild increase in uptake at the area of the facet joints in multiple levels of the mid to lower thoracic spine and left lateral intervertebral uptake seen at one level in the mid thoracic area at approximately T7-6 on the left. There is a mild right convex thoracic and slight left convex upper lumbar scoliosis.

There is a quite mild increase in activity which is seen over the inferior right and to a lesser degree left SI joint areas. Distribution throughout the remainder of the skeleton is otherwise normal.

IMPRESSION
Mild increased activity is seen involving multiple facet joints areas in the mid to lower thoracic spine and lumbar spine as described as well as inferior SI joints. There is mild intervertebral uptake noted on the left in the mid thoracic area near T6-7.
Mild diffuse active arthropathy of the facet joints of the thoracolumbar spine and lower SI joints could have this appearance.

My interpretation

Mild everywhere active disease of the facet joints of the thoracolumbar spine and lower SI joints could have this appearance.

Since the patient has felt like crap for 4 months he probably has a disease.

Ive had more conclusive tests since. I just wondered back then if the Doctor should have picked up that the technician was trying to tell him something if only in a vague way. The wording can be so nebulous, at least to me. I have way more pain than when this test was done and breathing is now getting bad.

I just wondered if back then they could have done more to help me.Im not looking for agreement just honest opinions. Thanks

Skywalker, what was your actual diagnosis? Are there any mention of scoliosis, another spinal illness? The highlighted quote to my untrained eye (not a doctor!) tells me you have scoliosis. Did your doctors tell you this, too?

After that test I went about another 9 months with no answers or explanations, no diagnosis of anything. Terrible pain hard to move or breathe just got worse.

I got a Dx of Ankylosing Spondylitis about a month ago 03/2011. No one has ever told me I have scoliosis just AS. Is scoliosis a side effect of AS?

As of today- They only say I have AS and maybe something else going on in my spine but there not sure what. I only have a physical copy of that nuclear scan I posted from a year back and 1 CT scan from a year back.

Noone has ever said I have scoliosis.

No, it is not a side effect of AS. I was originally diagnosed with AS, then Scoliosis when x-rays revealed my spine was curved into an S shape. Scoliosis IS a spinal disease. I have a lot of pain from these curves with the worst pain coming from the lumbar curve.

Is there any way you could ask what the 'something else going on in your spine' is?

I have asked the 2 doctors I deal with "what the something else is" they say "don't know".

I then tried to ask what makes it so hard for them to know. Then I get a answer similar to that of what a politician would give. 5 mins of dialog without a answer. I get real frustrated.

Wonder how I ended up with scoliosis and why they never talk about it with me. Not even a mention. Especially if its a disease itself.

in my experience, most of my doctors just don't get too excited when the word "mild" is used. sounds like maybe that was your doctor's take on it as well.

with that said, some of my doctors will look at the scans themselves, put those results together with how i was feeling when the scans were taken (i've never been during a flare), how much better/worse i am at other times, put other pieces of data into the puzzle, and make a decision that way.

Yes it is. Just like RA affects joints causing some patients to have gnarley and twisted hands and feet, AS patients can have Scoliosis and more often Kyphosis which is the twisting of the spine. I should know because I have a pronounced Kyphosis with mild Scoliosis which is why I always get those questions "Oh how did you hurt your back?"