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gyrene

Is It Als?

Question

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.

Thank you

Edited by gyrene

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The onset of ALS may be so subtle that the symptoms are frequently overlooked. The earliest symptoms are obvious weakness and/or muscle atrophy. This is followed by twitching, cramping, or stiffness of affected muscles; muscle weakness affecting an arm or a leg; and/or slurred and nasal speech. The twitching, cramping, etc. associated with ALS is a result of the dying muscle, therefore these symptoms without clinical weakness or atrophy of affected muscle is likely not ALS.

The parts of the body affected by early symptoms of ALS depend on which motor neurons in the body are damaged first. About 75% of people experience "limb onset" ALS. In some of these cases, symptoms initially affect one of the legs, and patients experience awkwardness when walking or running or they notice that they are tripping or stumbling more often. Other limb onset patients first see the effects of the disease on a hand or arm as they experience difficulty with simple tasks requiring manual dexterity such as buttoning a shirt, writing, or turning a key in a lock. Occasionally the symptoms remain confined to one limb; this is known as monomelic amyotrophy.

About 25% of cases are "bulbar onset" ALS. These patients first notice difficulty speaking clearly. Speech becomes garbled and slurred. Nasality and loss of volume are frequently the first symptoms. Difficulty swallowing, and loss of tongue mobility follow. Eventually total loss of speech and the inability to protect the airway when swallowing are experienced.

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Patients experience increasing difficulty moving, swallowing (dysphagia), and speaking or forming words (dysarthria). Symptoms of upper motor neuron involvement include tight and stiff muscles (spasticity) and exaggerated reflexes (hyperreflexia) including an overactive gag reflex. An abnormal reflex commonly called Babinski's sign (the large toe extends upward as the sole of the foot is stimulated) also indicates upper motor neuron damage. Symptoms of lower motor neuron degeneration include muscle weakness and atrophy, muscle cramps, and fleeting twitches of muscles that can be seen under the skin (fasciculations). Around 15–45% of patients experience pseudobulbar affect, also known as "emotional incontinence", which consists of uncontrollable laughter, crying or smiling, attributable to degeneration of bulbar upper motor neurons resulting in exaggeration of motor expressions of emotion.

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Well I'm going in tomorrow for that EMG and after doing almost nothing but research and reading the same 955,000 documents that google kindly ground out for me I guess I know as much as I can on the topic.

Will I go home with a diagnosis?

Don't know.

Will it be ALS?

Don't know but almost everything else has been excluded already and the Dr.wants to be there for the EMG so I'm thinking he is thinking it'll be ALS because he is out of aces if you know what I mean.

With the current backlog of almost 1,000,000 claims at the V.A.nationwide how will I do at the VAMC in Durham N.C.?

Don't know.But I'll let you know how it goes.BTW does anyone know which VSO I should use? or which one to avoid?

Won't get to the VAMC till Monday at the earliest.

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Not sure what happened yesterday at Duke, but just wanted you to know someone was thinking about you. Hope everything went well. God Bless

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Well I'm going in tomorrow for that EMG and after doing almost nothing but research and reading the same 955,000 documents that google kindly ground out for me I guess I know as much as I can on the topic.

Will I go home with a diagnosis?

Don't know.

Will it be ALS?

Don't know but almost everything else has been excluded already and the Dr.wants to be there for the EMG so I'm thinking he is thinking it'll be ALS because he is out of aces if you know what I mean.

With the current backlog of almost 1,000,000 claims at the V.A.nationwide how will I do at the VAMC in Durham N.C.?

Don't know.But I'll let you know how it goes.BTW does anyone know which VSO I should use? or which one to avoid?

Won't get to the VAMC till Monday at the earliest.

I wish I could figure this site out...it seems so complex....

I just want to ask a question of anyone out there who knows....

My husband was a Navy Vet and died of ALS almost 12 years ago. I have applied for DIC and meet all the requirements except that I can't seem to get a straight answer about 'boots on the ground'. He was a Viet N

am Era Veteran but was on a ship...can't prove boots on the ground myself. Is that a requirement with a confirmed ALS DX written on his death certificate?

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