tag0620
Distinguished member
- Joined
- Nov 18, 2008
- Messages
- 175
- Diagnosis
- 11/2008
- Country
- US
- State
- ut
- City
- park city
Hi all,
Went to the UofU infectious diseases today. The first doc did the cursory physical exam (strength test, reflexes, eyes, ears, throat, etc), then just wanted to talk, and listen, and take notes. He took our blood tests and the readings (explanations) from our MRI's and said he was going to step out, try to put all of the data together with his notes, and return with his "boss" to let us know what they thought.
When they came back in, he returned with his boss...she listened to our story again...but asked him to read the "findings" page from the Oct MRI again. She asked us if we understood exactly what it meant and explained that there was a slight slippage of the disks the level up from where my husband was fused in April...and asked why no one had been looking at his back to which we responded "that's what we've been asking". She said that EVERYTHING she's seeing as far as atrophy, weakness, symptoms is something that can be explained by the level of the spinal cord that had injury/trauma/surgery...it's all lower body...she also said the peaks and valleys that he's been experiencing are not typical to als...that normally it's a steady decline.
She then took the MRI down to radiology at the hospital and looked at it with the radiologist. #1. there is still fluid around the surgery site which could be residual post operative fluid or it could be infection (so they'll run more blood tests to check for bacteria and many other things), #2. she thinks that next level up on the spinal column shows nerves that might be fairly pinched and scheduled him for another, more detailed, digital mri with and without contrast, #3 she's referring us to another neurologist (unfortunately in the same building as the one who hastily gave us the als diagnosis.
She also made a comment that I need advice on. She said diagnosed als patients who are far enough along to have a confirmed diagnosis will show an inflamation around the edges of the spinal column...and Jim doesn't show any of this. Does this sound correct as I haven't heard about this before.
Anyway...she doesn't think it's RMSF but is checking for other forms of infection just in case...she was shocked that he was diagnosed this quickly without a lumbar puncture or biopsies or a brain mri...She is the first person to look at what started the problems in the first place and then move on from there instead of dismissing the other problems in favor of a terminal illness, and she DOES NOT think it's als although she's not a neurologist (always have to have the disclaimer ya know...).
I feel like we're back at square one...but that's a better vantage point than at the edge of the cliff with a diagnosis...at least there's room for some hope now.
Thanks everyone! Blood on Mon, MRI on Wed, next neuro don't know (hurry up and wait)!
Went to the UofU infectious diseases today. The first doc did the cursory physical exam (strength test, reflexes, eyes, ears, throat, etc), then just wanted to talk, and listen, and take notes. He took our blood tests and the readings (explanations) from our MRI's and said he was going to step out, try to put all of the data together with his notes, and return with his "boss" to let us know what they thought.
When they came back in, he returned with his boss...she listened to our story again...but asked him to read the "findings" page from the Oct MRI again. She asked us if we understood exactly what it meant and explained that there was a slight slippage of the disks the level up from where my husband was fused in April...and asked why no one had been looking at his back to which we responded "that's what we've been asking". She said that EVERYTHING she's seeing as far as atrophy, weakness, symptoms is something that can be explained by the level of the spinal cord that had injury/trauma/surgery...it's all lower body...she also said the peaks and valleys that he's been experiencing are not typical to als...that normally it's a steady decline.
She then took the MRI down to radiology at the hospital and looked at it with the radiologist. #1. there is still fluid around the surgery site which could be residual post operative fluid or it could be infection (so they'll run more blood tests to check for bacteria and many other things), #2. she thinks that next level up on the spinal column shows nerves that might be fairly pinched and scheduled him for another, more detailed, digital mri with and without contrast, #3 she's referring us to another neurologist (unfortunately in the same building as the one who hastily gave us the als diagnosis.
She also made a comment that I need advice on. She said diagnosed als patients who are far enough along to have a confirmed diagnosis will show an inflamation around the edges of the spinal column...and Jim doesn't show any of this. Does this sound correct as I haven't heard about this before.
Anyway...she doesn't think it's RMSF but is checking for other forms of infection just in case...she was shocked that he was diagnosed this quickly without a lumbar puncture or biopsies or a brain mri...She is the first person to look at what started the problems in the first place and then move on from there instead of dismissing the other problems in favor of a terminal illness, and she DOES NOT think it's als although she's not a neurologist (always have to have the disclaimer ya know...).
I feel like we're back at square one...but that's a better vantage point than at the edge of the cliff with a diagnosis...at least there's room for some hope now.
Thanks everyone! Blood on Mon, MRI on Wed, next neuro don't know (hurry up and wait)!