sdsyd
Distinguished member
- Joined
- May 22, 2008
- Messages
- 329
- Country
- US
- State
- sd
- City
- piedmont
Hi guys.
It took awhile but I did finally recieve the report from University of Colorado and will post some of it for help interpretting for those who feel comfortable helping me interpret.
I am going back July 9th to see her again as per my local neuro. I did finally quit my job, my Grandma passed away a little over a week ago and we had her funeral Monday. I am sad that she is gone, but I know she is no longer suffering, which is a great comfort to know she is now at home where she belongs. I have been to the nursing home 4-7 times a week since January and we spent the last three days and nights along with my two sisters consistantly there and were able to be there when she passed, while I was reading Philippians aloud. Anyhow- thanks u guys for all your help and support along the way.
I began PT again and next week they will cast me for Bilateral Platinum AFO's, as hesitant as I was to do this, the pre-fab versions definately helped me walk better, so I will have to LUMP it and be confident wearing them with shorts this Summer and just be glad to still be walking- RIGHT?
Okay here are the findings from the EMG/NVC that were abnormal.
reduced sural potential
focal slowing in ulnar nerves
asymmetry of peroneal F waves
slowed conduction velocity across wrist
prolonged distal motor latency (right ulnar)
recruitment pattern in ulnar innervated flexor digitorum profundus and first dorsal interosseous muscles reduced without definite morphology changes
She states that she does not have a diagnosis for my neurological disorder but suspects it is a demyelinating process with possible underlying autoimmune mediated.
This is the part that "gets my goat" When she suggests CIDP or Multi Focal Motor Neuropathy as her primary concerns, she adds to do the spinal tap to check for the antibodies and if they are positive to go ahead with IVIG. she goes ON to state that EVEN without the GM1 antibodies, it would be worth an emperic treatment trial to see if she improves.
When my local neuro got the results from the spinal tap- he said he consulted with her and that since the antibodies were negative , the IVIG would not be without some risk and did not feel comfortable administering it. SAY WHAT?
Thanks for the advice to get these records. Hope everyone is hanging in there and I hope to stay in touch a little better on the boards.
Love,
Cindy
It took awhile but I did finally recieve the report from University of Colorado and will post some of it for help interpretting for those who feel comfortable helping me interpret.
I am going back July 9th to see her again as per my local neuro. I did finally quit my job, my Grandma passed away a little over a week ago and we had her funeral Monday. I am sad that she is gone, but I know she is no longer suffering, which is a great comfort to know she is now at home where she belongs. I have been to the nursing home 4-7 times a week since January and we spent the last three days and nights along with my two sisters consistantly there and were able to be there when she passed, while I was reading Philippians aloud. Anyhow- thanks u guys for all your help and support along the way.
I began PT again and next week they will cast me for Bilateral Platinum AFO's, as hesitant as I was to do this, the pre-fab versions definately helped me walk better, so I will have to LUMP it and be confident wearing them with shorts this Summer and just be glad to still be walking- RIGHT?
Okay here are the findings from the EMG/NVC that were abnormal.
reduced sural potential
focal slowing in ulnar nerves
asymmetry of peroneal F waves
slowed conduction velocity across wrist
prolonged distal motor latency (right ulnar)
recruitment pattern in ulnar innervated flexor digitorum profundus and first dorsal interosseous muscles reduced without definite morphology changes
She states that she does not have a diagnosis for my neurological disorder but suspects it is a demyelinating process with possible underlying autoimmune mediated.
This is the part that "gets my goat" When she suggests CIDP or Multi Focal Motor Neuropathy as her primary concerns, she adds to do the spinal tap to check for the antibodies and if they are positive to go ahead with IVIG. she goes ON to state that EVEN without the GM1 antibodies, it would be worth an emperic treatment trial to see if she improves.
When my local neuro got the results from the spinal tap- he said he consulted with her and that since the antibodies were negative , the IVIG would not be without some risk and did not feel comfortable administering it. SAY WHAT?
Thanks for the advice to get these records. Hope everyone is hanging in there and I hope to stay in touch a little better on the boards.
Love,
Cindy