BethU et al
I second what Al said. Its so amazing, that its hard to know how to take it all in! Especially the vision question really, truly needs to be addressed. If this is a hallmark of this kind of palsy, then someone needs to acknowledge it and explore that more. When you add that to the swallowing, and now balance, it would be so much easier if that could be all one tidy package, but then you've got the other symptoms. Hopefully, because the really good doctors love a challenge, you'll hold their interest and maybe finally get somewhere!
But, enough about you, lets talk about me (LOL)
Only kidding. But I DO have EMG related news today. I went to Mt Sinai for a repeat EMG of my vocal cords. Remember, (or not, depending on how much one has read my posts) that last autumn, chronic denervation and renervation was found in all muscles that operate the vocal cords (and these are cranial nerve controlled). Then in April an EMG on my tongue was performed, but the guy stuck my tongue way in the back of it, and all of the visible atrophy and most of fascis and twitching are in the front. it came back normal. My neuro at Hopkins seemed kind of irritated that he didn't do it where the atrophy was, but she shrugged it off, as the tongue and vocal cords are both in the bulbar region, so for diagnostic purposes it didn't change things. Anyway, today they also stuck my tongue.
I'm now in the same murky waters as Beth is. Well, not actually the same murky waters, I have my own murk. My vocal cords showed the denervation, but there was no longer any active renervation going on. My doctor said it might possibly be just where they happened to catch me in the cycle.. But, as there isn't a dramatic worsening of these muscles, and its been almost a year, they really don't know why the findings. But, my tongue had the denervation and renervation.
twisted
in a little less than two weeks I'm going back there (locally in NYC) to have another EMG on my limbs. This way, when I get down to Hopkins for my first ALS clinic visit, they should have all of the latest and greatest test results.
I was frustrated with the lack of clarity in their findings, (stating the obvious here!) And I
so want for someone to at least attempt to give me a prognosis. All of the doctors have settled on motor neruon disease, and I guess if the EMG on my limbs comes back as they expect, it may change to ALS, but what kind of ALS? If its bulbar onset, why did that part ~ or at least my vocal cords stop progression, could that technically be considered a plateau? and why the much quicker, increased problems with my legs? (I actually asked that, and got the standard "motor neuron disease progression varies from individual to individual" reply)
And, as Beth was talking about eyes, I've been having fluttery fascics near my left eye. and the neuro at Hopkins thought I had weak eye closure. I thought eyes were exempt (I know, I know, except when they're not). and, I've been having these scull squeezing spasms in my cheekbone area, like an invisible vice is squeezing my face. They're different than the crampy "laughed too much" spasms that I get more in the fleshier parts of my cheeks . What the heck is with that?
I guess I'm back to the "oh no, what if they're missing something, and I'm actually treatable! "....mode again.
Beth, I agree that Parkinson's isn't the best option out there for your hubby, but its better than ms, and if there can be some treatment given to make him feel better, that's the goal, right?
That's funny about your upper arm! How often do we actually look at them? Then there are our tongues, and soles of feet, we just don't care what they look like, until we care.
I really don't know what to think about the newest with you. Just know you've got many friends here pulling for you!
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