On June 19th I go in for an EMG.This is with my neuorologist at Duke.I think I will get a dx of ALS as we have already excluded M.S.,Chronic Inflamatory Demylinating Polyneuropathy,Multifocal Motor Axonopathy and its not Progressive Bulbar or Primary Lateral Sclerosis.He says he does not know what I have but its in the spinal muscular atrophy family.He mentioned Progressive Muscular Atrophy.I have lower motor neuron symptoms like fasciculations in both foreams and legs and across the belly,muscle cramps in both hands,atrophy of the left forearm and hand and now have fasciculations in the eyelids and throat.I have stumbled across totally level floors like at Target or J.C.Penney or even in my own home.On numerous occasions I just fall into tears for no real good reason.The muscles in the area around my neck are tight and I have a "real" pain in the neck on the left side.I have lost muscle mass in my chest area.Some of the muscle cramps have seemed like the jaws of life being used on me.There is more too but I think you all get the idea.
So it seems to me I have both upper motor neuron and lower motor neuron symptoms.
And therefore I think the dx will be ALS.
Now the question is this.Do I need to get the PVA.org involved on my behalf so I can get into the V.A.system?Do I need a VSO?How do I get one?
If my doc at Duke says its ALS will I see a VA doc so he can confirm it?Isn't the dx from Duke enough to trigger a VA rating?
How much testing will they ask me to undergo only to prove to them that the Duke doc is correct?
How far along does a guy have to be before he gets a 100% rating?
I just found this board today and want to thank who ever it is that put it together and keeps it going.Its beyond me to know how this gets done but I sure do appreciate it.
Edited by gyrene, 10 June 2009 - 07:36 AM.