Mellen
Member
- Joined
- Oct 1, 2015
- Messages
- 10
- Reason
- Loved one DX
- Diagnosis
- 08/2015
- Country
- US
- State
- VA
- City
- Wytheville
My husband began experiencing some memory issues and executive functioning deficits, and drooling (not excess saliva) about 10 months ago (this is the only thing that has improved) we also noticed all over muscle wasting with worse wasting L leg, had cramps in his leg (worse at night) in the early summer he noticed L leg weakness, twitching, Multiple blood tests (every possible explanation that could be ruled out by labs), X-rays, MRIs, all showed no reason for symptoms
Exam by Cleveland Clinic Neuro showed upper and lower motor neuron ax in 2 of 4 regions and lower motor neuron in a third
Then we went for EMG!
It was over quickly and 100 miles into the drive home we realized they only tested his Left arm and leg in spite of the NMD protocol ordered
Dr Tavee did not do it
We had to turn around and go back
She was very frustrated and quickly and very roughly did some facial and tongue
He had some minimal numbness in his L foot but has been a well controlled type Ii diabetic for 10 plus years
She sent a report that was for the RIGHT side without all muscles reported
Two minor non sustained abnormalities in mentalis and thoracic muscles (
Myokymia) now we cannot get back on the track for diagnosis! It has been hard to get the report corrected
We just got back from 6 hour drive, overnight stay and a movement disorder specialist said he didn't have Parkinson's . We never thought he did
He has a significant positive Rhomberg test also and his symptoms of muscle cramps, increasing weakness now some in L hand are gradually worsening
Drooling still present, increase fumbling with hands, fell 1 week ago
I am absolutely convinced it's ALS and know there is no cure/treatment but I hate to see him waste this time when he is mobile with him working 12 hours a day because we have no diagnosis
Any suggestions would be helpful
Exam by Cleveland Clinic Neuro showed upper and lower motor neuron ax in 2 of 4 regions and lower motor neuron in a third
Then we went for EMG!
It was over quickly and 100 miles into the drive home we realized they only tested his Left arm and leg in spite of the NMD protocol ordered
Dr Tavee did not do it
We had to turn around and go back
She was very frustrated and quickly and very roughly did some facial and tongue
He had some minimal numbness in his L foot but has been a well controlled type Ii diabetic for 10 plus years
She sent a report that was for the RIGHT side without all muscles reported
Two minor non sustained abnormalities in mentalis and thoracic muscles (
Myokymia) now we cannot get back on the track for diagnosis! It has been hard to get the report corrected
We just got back from 6 hour drive, overnight stay and a movement disorder specialist said he didn't have Parkinson's . We never thought he did
He has a significant positive Rhomberg test also and his symptoms of muscle cramps, increasing weakness now some in L hand are gradually worsening
Drooling still present, increase fumbling with hands, fell 1 week ago
I am absolutely convinced it's ALS and know there is no cure/treatment but I hate to see him waste this time when he is mobile with him working 12 hours a day because we have no diagnosis
Any suggestions would be helpful