tag0620
Distinguished member
- Joined
- Nov 18, 2008
- Messages
- 175
- Diagnosis
- 11/2008
- Country
- US
- State
- ut
- City
- park city
Good Morning Everyone!
Well...where to start...He's 6 weeks into his anabolic steroid cycle and is able to stand on one foot (shaky, but couldn't do it before), can put his feet up on the table unassisted (couldn't do), can cross his legs unassisted (couldn't do), can do exercises that he couldn't do before (and has increased weight lifted on all body parts), etc, his fasciculations are greatly reduced and cramping is reduced from what it once was. He still has a hard time getting up stairs and walking on the snow/ice/uneven surfaces...but has not used his cane in weeks (and it was almost mandatory before).
He was on an antibiotic for Rocky Mountain Spotted Fever for 4 weeks as a precautionary measure after testing positive twice. We had to wait for new insurance cards to come in before getting his blood tests re-done to check liver/testosterone/prostate functions...and to make sure this virus was gone....in those two weeks of waiting for our insurance...he started getting weaker...when the blood was tested...he had a THIRD positive for RMSF...it's BAAAACK...and could explain his weakness starting to return. We have now had "infectious diseases" at the University of Utah agree to see us after this positive. We go in on Friday of this week.
We don't know if it is in fact Rocky Mountain Spotted Fever (it's VERY rare where we live)...with the timing of when he started to go downhill...we wonder if he may have contracted a hospital born virus that may have attacked his spinal cord during his surgery that is showing up on tests as RMSF....hopefully we'll be able to figure this out.
I just find it interesting that he keeps testing positive for a virus that if left unchecked will attack the central and peripheral nervous systems...and can cause partial paralysis of the lower extremities...btw...there has been no spread that we can see to the upper limbs in strength and no atrophy in upper body....just the one "off" emg which we're hoping can be explained by this virus.
We have not been back into the als clinic since his "diagnosis" as we still don't want to accept that diagnosis with everything else that he has going on that no-one other than ourselves and our family physician want to look at (1 1/2 yrs severe spinal stenosis/broken back, fusion surgery, 3 positive RMSF tests)...but at least now...infectious diseases thinks this may be something to look at....so wish us luck...(this doesn't keep us from being terrified after getting that initial diagnosis)
btw...here is some inspiration...he's not letting this diagnosis slow him down...(this was taken in Big Sky MT this weekend...his third sit-ski lesson!)
He's hoping to have his legs back for next season...
Well...where to start...He's 6 weeks into his anabolic steroid cycle and is able to stand on one foot (shaky, but couldn't do it before), can put his feet up on the table unassisted (couldn't do), can cross his legs unassisted (couldn't do), can do exercises that he couldn't do before (and has increased weight lifted on all body parts), etc, his fasciculations are greatly reduced and cramping is reduced from what it once was. He still has a hard time getting up stairs and walking on the snow/ice/uneven surfaces...but has not used his cane in weeks (and it was almost mandatory before).
He was on an antibiotic for Rocky Mountain Spotted Fever for 4 weeks as a precautionary measure after testing positive twice. We had to wait for new insurance cards to come in before getting his blood tests re-done to check liver/testosterone/prostate functions...and to make sure this virus was gone....in those two weeks of waiting for our insurance...he started getting weaker...when the blood was tested...he had a THIRD positive for RMSF...it's BAAAACK...and could explain his weakness starting to return. We have now had "infectious diseases" at the University of Utah agree to see us after this positive. We go in on Friday of this week.
We don't know if it is in fact Rocky Mountain Spotted Fever (it's VERY rare where we live)...with the timing of when he started to go downhill...we wonder if he may have contracted a hospital born virus that may have attacked his spinal cord during his surgery that is showing up on tests as RMSF....hopefully we'll be able to figure this out.
I just find it interesting that he keeps testing positive for a virus that if left unchecked will attack the central and peripheral nervous systems...and can cause partial paralysis of the lower extremities...btw...there has been no spread that we can see to the upper limbs in strength and no atrophy in upper body....just the one "off" emg which we're hoping can be explained by this virus.
We have not been back into the als clinic since his "diagnosis" as we still don't want to accept that diagnosis with everything else that he has going on that no-one other than ourselves and our family physician want to look at (1 1/2 yrs severe spinal stenosis/broken back, fusion surgery, 3 positive RMSF tests)...but at least now...infectious diseases thinks this may be something to look at....so wish us luck...(this doesn't keep us from being terrified after getting that initial diagnosis)
btw...here is some inspiration...he's not letting this diagnosis slow him down...(this was taken in Big Sky MT this weekend...his third sit-ski lesson!)
He's hoping to have his legs back for next season...