Atrophy

Does MS cause unilateral facial atrophy? Or atrophy of leg/arm muscles?

[COBOB]

Not directly - there is some disuse atrophy for people in a wheelchair, etc. The next question is this atrophy from lack of use (no muscle activation) or muscle wasting (cell breakdown, dark urine, etc?)  MS may prevent you from moving a limb, and when this happens, passive ROM and PT are very important.  What MS takes away, it may decide to give back.  Atrophy of facial muscles if pretty rare.  Are the facial muscles actually shrinking or do you mean something more like Bell's Palsy?

Bob

[cardiactec]

If I move my tongue across the inside of my left and then right inner cheek, there is less bulk on the left side than there is on the right....also have the whole nasally speech going on.... And from what I can see, there is a scalloped appearance to the side of my tongue on the left side..... Im pretty certain this is not good. Most of my symptoms fit the motor neuron disease box..... Just wondering if my EMG was done too early so that they "missed" a motor neuron issues.... But then again, youd think with these symptoms being so severe that they'd see a motor neuron issue already on emg. (??)

When they did my emg a month ago paraspinal muscles tested were normal. They never tested the tongue/throat (not even sure If they can?)....

[cardiactec]

Can motor neuron disease cause SSEP abnormalities?

[COBOB]

I don't think so.  SSEP is sensory posterior cord.  EMGs can normally detect changes long before you will see anything.  Maybe feeling less bulk with your tongue is a sensory issue?  Cheeks on the side of the mouth don't have much muscle.  Maybe there is a sensory issue with the buccal mucosa?  They cant do an EMG for the throat.  The closest thing I can think of is a swallowing study.  That's more of a high speed video thing to watch the coordination of a swallow.

Most "facial atrophy" that I have seen is actually  lipodystrophy related to anti-viral dugs (protease inhibitors.)

Bob

[cardiactec]

Not sure. I am having one of those swallowing studies next week in Boston. Sometimes when I eat it feels like I'm regurgitating food up my nasal cavity. Not a pleasant feeling.

I have no idea what to think about what's going on with me. I'm trying to be patient and calm while they schedule my surgery for explant of my device in order to get MRI.

My SSEP in both my legs was abnormal. SSEP in my arms, normal. VEP normal. My emg a month ago showed mild polyphasia/reinnervation with no myopathic motor units demonstrated. Left deltoid and left tensor fasia latae is where they saw mild polyphasia only. They then went for the paraspinals (neck and lower back) and those were normal. Nerve conduction normal.

Do you know if CK levels would be elevated in motor neuron disease? I just asked my doctor for a CK check.

Also is urinary incontinence a typical finding in people with motor neuron disease?

[COBOB]

Not typically.  CK (Creatinine Phosphokinase - CPK) is an enzyme contained in brain, heart muscle  and  skeletal muscle.  CPK by itself tells you tissue is breaking down, but not where.  If CPK is high, they will need to order "CPK with Isoenzymes REGARDLESS."  This will break CPK down into three subfractions: BB, MB, MM.  
BB is Brain CPK, MB is Cardiac CPK, and MM is Skeletal Muscle CPK.

If CPK(MM) was high, I'd expect to see Coke colored urine from spilling Myoglobuline.  This is some messy stuff if that is happening. If you wouldn't mind, can you summarize your tests and labs in a Journal Entry?  That would make it easier for those of use interested to follow and see if we can help you out (not my idea - it's what Quix suggests)

Bob

[cardiactec]

Again, thank you Bob for your help. I will try and get a journal put together today/tomorrow.

Re:coke urine. I don't have that! Sounds scary! My urine is dark, however. And it's.not from drinking enough water/fluids/re: dehydration.

I will work on the journal

Thanks

[cardiactec]

Does motor neuron disease cause pain? According to my neurologist, he says "no", but from what i've read online, people get a lot of pain with it ..... ?