Anyone else with B.A.D. diagnosis?

[Mesquitemr]

new to the forum so please forgive messy typing, etc. I began having fasciculations in left arm in Jan 2016. father had Parkinsons and I've had restless leg syndrome for 20 years and been on parkinsons meds so I assumed that was cause. Pk was ruled out but had emg ncv in july 2016 and neuro indicated issues with left arm might be ALS. had cervical mri at same time that indicated problems there. Two neck surgeries in 2017 with no improvement and considerable loss of use of left arm/hand. Changed doctors when the right arm began to follow same pattern and was referred to the U.T. Southwestern Motor Neuron Clinic in Dallas. EMG there indicated severe issues in arm, moderate in back and mild in leg resulting in formal diagnosis on 11/9/17 of brachial amyotrophic diplegia. Typing now with one finger, have trouble raising arms to eat, dress, etc. Buttons are not my friends. this variant is apparently rare and there is very little info out there on the net. Anyone else dealing with this? Thanks

 

[lgelb]

More often these days the label would be the flail arm variant of ALS, which is the type my husband had. Google around and you'll see it.

Sorry to hear of your diagnosis, Mesquite, and we'll support you here however we can.

Best,
Laurie

 

[Mesquitemr]

Thanks, Laurie. I’ve read many of your posts and find your responses to be based on both knowledge and compassion.

Michael