rangerbob
Member
- Joined
- Aug 16, 2010
- Messages
- 24
- Reason
- Learn about ALS
- Diagnosis
- 01/2011
- Country
- US
- State
- CA
- City
- Mountain View
greetings everyone. wanted to stop by and give you update on my wife...we were hoping it wasnt MND but not so sure. its probably not ALS but probably MND...
today in her current state she is having the following issues:
a. she can no longer lift her arms any higher than shoulder level
b. is having a very difficult time walking up stairs
c. is short of breath walking the shortest of distances
d. beginning to have weakness lifting herself from a sitting to a standing position
e. has extreme fatigue which she describes as having "zero energy"
f. starting to feel increased weakness in her upper thighs
g. can no longer lift her arms for any extensive amount of time to wash her hair, bath herself, drive a vehicle, and other simple tasks
the doctors have looked at everything to include cancer, etc.... she was admitted as an inpatient for 5-day IVIG treatment which provided some relief but symptoms all came back within several days. he is trying steroids right now as well... he said, "i'm gonna do all that i can"
her doc did another EMG about 10 days ago and concluded the following:
"Needle EMG examinations of the right tibialis anterior and the left thoracic paraspinal muscle showed abundant positive sharp waves and fibrillation potentials. Motor units captured in the tibialis were polyphasic and large with increased amplitude and duration; recruitment was reduced as well. This study, combined with previous studies, demonstrates electophysiologic evidence of a motor axonal neurogenic process with widespread active and chronic denervation with reinnervation. This is consistent with a diffuse disorder of lower motor neurons or nerve roots."
i guess at this point we are starting to prepare ourselves for the worst. i am trying to get her in for an appointment at johns hopkins neurology..i am afraid if i wait too long she will no longer be mobile. her four month pregnancy has us concerned as well. i am also starting to get our bathroom redone as well to accomodate the possibility of a wheelchair.
any advice, insight or the such on anything above (such as the EMG or getting an appt at JH or mental/emotional hurdles to prepare myself for) would be greatly appreciated....thanks!
RB out.
today in her current state she is having the following issues:
a. she can no longer lift her arms any higher than shoulder level
b. is having a very difficult time walking up stairs
c. is short of breath walking the shortest of distances
d. beginning to have weakness lifting herself from a sitting to a standing position
e. has extreme fatigue which she describes as having "zero energy"
f. starting to feel increased weakness in her upper thighs
g. can no longer lift her arms for any extensive amount of time to wash her hair, bath herself, drive a vehicle, and other simple tasks
the doctors have looked at everything to include cancer, etc.... she was admitted as an inpatient for 5-day IVIG treatment which provided some relief but symptoms all came back within several days. he is trying steroids right now as well... he said, "i'm gonna do all that i can"
her doc did another EMG about 10 days ago and concluded the following:
"Needle EMG examinations of the right tibialis anterior and the left thoracic paraspinal muscle showed abundant positive sharp waves and fibrillation potentials. Motor units captured in the tibialis were polyphasic and large with increased amplitude and duration; recruitment was reduced as well. This study, combined with previous studies, demonstrates electophysiologic evidence of a motor axonal neurogenic process with widespread active and chronic denervation with reinnervation. This is consistent with a diffuse disorder of lower motor neurons or nerve roots."
i guess at this point we are starting to prepare ourselves for the worst. i am trying to get her in for an appointment at johns hopkins neurology..i am afraid if i wait too long she will no longer be mobile. her four month pregnancy has us concerned as well. i am also starting to get our bathroom redone as well to accomodate the possibility of a wheelchair.
any advice, insight or the such on anything above (such as the EMG or getting an appt at JH or mental/emotional hurdles to prepare myself for) would be greatly appreciated....thanks!
RB out.