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Wmjsmith

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Jan 12, 2017
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Learn about ALS
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Us
State
Nd
City
Bismarck
Background: Swallowing difficulties since 7/16. Progressively worse to where I'm now liquid diet only. Weight loss stabilized around 60 pounds (dx esophageal motility disorder unknown origin by Mayo GI).

Symptoms progressed to jaw, neck, lips, face & tongue: cramping, pain, weakness, weird sensations. Tongue has an odd "pulling" sensation, twitching/crampy with use, but not "squirmy" "wormy" when at rest. Moves in all directions fine. When I eat ice or cold food, my tongue function slows down and I slur words. Do not slur when tongue isn't cold.

I cannot puff air into my left cheek. When I tense my neck muscles, the front right side sterno won't flex but the left will. I cannot clench my eyes shut tight. Both easily pull open with no effort. My lips function, but feel loose and weak. I can whistle and move my tongue in all directions. It's like whatever this is, is slowly spreading all over my head, face & neck.

Also have off and on limb pain various locations, twitching, cramping and (perceived not clinical) weakness. No clinical atrophy or loss of use in any limb.

I have a constant pain under my right rib cage, abdomen since January and off and on feel "air starved" with breathing (ongoing last 3 days, but have had spells 5-6 times since January).

Other oddities, left foot sole has near constant buzzing/vibrating feeling. Mid-spine pain like someone is pressing on it hard (ongoing 2 months, never goes away).

I've had 3 neuro clinical exams. No dx. Negative blood test for MG. One said, sometimes we never figure it out exactly. Rheumatologist says fibromyalgia. Primary PA and doc basically don't want to see me, think its in my head.

Finally had an EMG on right arm, thumb, thigh and foot. All "normal". I asked neuro to test neck, face etc. he said it wasn't necessary. (I live in a rural area, this was a traveling neuro, wasn't much for bedside manner, taking questions or anything other than testing my arm and leg).

Would a normal emg on right side limbs mean I'm clear everywhere?

I was referred to another neuro in a larger town because the traveling neuros says they don't deal with this kind of stuff very often, but I won't see the new neuro for 2 months.
 
I have read your previous threads and you reported a lot of limb symptoms too. If you have an EMG in one or more affected areas as seems to be the case it is not necessary to EMG all areas if the EMG is clear.

Many bulbar onset PALS have abnormal limb EMGs even before they have symptoms other than bulbar

I hope your new neuro can help you figure it out
 
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Thank you! So even if it was bulbar onset the limb EMG would have not been normal? That helps me to hear.
 
That is usually true but you are missing my point. You have reported symptoms in your limbs too
 
Yep I think I understand your point, being I report limb symptoms but clear limb EMG = no ALS.

The traveling neuro wouldn't say that and I wish they would rather than saying "go see this other guy this isn't my area of expertise."
 
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