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rose

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I know this has been discussed a little bit on here before, the fact that ALS does not necessarily limit itself to motor neurons.

I asked specifically about this when I was at the ALS clinic in the context of why (in my case) it seems to cause my dry mouth, and conversely most have a problem with too much saliva. My question was why did it affect saliva production either way, if it was a motor neuron disease. The answer given me was that it is a system wide disease.

I'm wondering, if, when the cause of ALS is understood, how wide of a variety of conditions, now grouped under the one big umbrella of ALS, there will turn out to be? (as if anyone can answer this, right?)

I didn't start out with a typical onset. ... To be clear about my official diagnosis status, I've not gone back to have another limb EMG, but my neurologist has said it is her clinical opinion that I do have ALS. I don't know if I've moved from "probable" to "definite" or not, we really didn't discuss it. Reading her notes from my last visit, she doesn't have any question marks... she just says I'm in the "early stages" of MND.

But, back to how this seems to be moving through my body.... I had the bulbar problems (still do, obviously) The presentation was with my voice though, not my speech. EMG of my vocal cords did show the typical pattern diagnostic for motor neuron disease .... But, right now, my voice isn't a whole lot worse than it was in mid summer. As for the quality of my speech,...I'm having more days that I slur, but its still not a huge problem for me.. doesn't seem like I talk overly slow, but I know I don't speak as fast as I used to. Swallowing and eating are just a drag, but I can't tell that the swallow itself is much weaker than it was, say, six months ago.

In late spring my arms were found to be weak, which caught me off guard, as I thought maybe I was going to just be a bulbar palsy girl... Then by mid summer my legs started to get weak, and began with the fasciculations, which surprised me too, because my arms really hadn't progressed in weakness all that much, and were having only minimal twitching in them.

But, still, I got to be OK with this, (mentally/emotionally) because the legs seemed to be where the most action was, as far as progression, and if I had to choose between my legs or arms working, I was going for the arms, and if I had to choose between my throat and tongue working and my legs... my legs were the most expendable.

So now, this jerk of a disease seems to have decided to see what it could do with my gastric process.... I have problems with my esophagus, and starting to find my stomach isn't in any hurry to empty either.

I asked my neurologist if this could be unrelated to the ALS. She said it was unlikely, that the 10th cranial nerve was responsible for this process. I asked why, wasn't it smooth muscle - (well the top of the esophagus is partly skeletal, but the rest is smooth), and she gave me the same explanation I was given before, that ALS didn't always limit itself to just motor neurons.

But, this is the thing: To read what I've just described, you'd think I was really advanced. But I'm not. This is the point I'm trying to make, that the progression not only isn't typical, but it doesn't seem like it waits until one area is that affected gets horribly bad before it moves on to greener pastures. I don't think any of me is all that weak, rather just a lot of me that isn't strong anymore.

On the other hand, what is typical is that its gradual, nothing has hit me overnight, or over a period of a few weeks, or been blatantly obvious. Its sneaky. I can't put my finger on when anything started to go awry. Another thing that is typical is that nothing ever improves. Some things seem to have periods where they don't get worse, but they never get good again.

Last night I succumbed to Google. It started out trying to find something on gastric problems and ALS. ... I did find some information on this, and the consensus is that it can cause gastroparesis. (sigh)

The interesting thing that I stumbled across was about sweating. I know there has been one guy here on the forum that has posted about excessive sweating. Well, the terminology for the perspiration system in our bodies is called sudo-motor and some studies were done that found in the beginning stages of MND, those in the case study sweated more than normal, and as the disease progressed, they sweated less and less.

I just don't understand how I can seem to have so many areas affected a little, but yet another person can (for example) just have their legs be involved for quite a period of time, before anything else manifests itself. How can that person and me "have" the same thing?

I almost feel that, just as right now there is the classification of UMN or LMN dominant, there might also be a classification of specific nerve dominant. Leaving my arms and legs out of the equation, that damned 10 cranial nerve is responsible for so much what is wrong with me. - and the 7h as well, and not just motor functions with these nerves, but excretory, parasympathetic, etc. So, maybe I'm 7th and 10th cranial nerve dominant....
 

Zaphoon

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Rose,

You may have something there! I wish had something more to contribute.

Zaphoon
 

ptich

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rose, you're right that ALS is not a local, but rather a systemic desease. A lot of brain areas may be affected, some of them are far from the motor cortex. Personally, I don't see much value in classifying ALS by the type of onset (bulbar, leg, etc) because another area may become more problematic later. Also, from personal obseravtions and from reading the posts, it seems to me that the "bulbar" onset is usually more generic (everything seems affected) while limb onset is more localized initially. Also it seems that what often called bulbar onset is more like UMN onset - it is just that UMN deficiencies are easier detected with speech and swallowing than in arms / legs.
 

Sammantha

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Hey Rose! Whatever i have hits places like a patchwork quilt.. One area like my hand will deteriorate, then someplace like my breathing muscle will start in and cause massive symptoms... I just hope that the breathing issue plateau's like my arms and legs.. I HAVE dry mouth too. I get it in the morning from sleeping because of weak facial muscles, i get it when i am extremely nervous, and i got it today because of my surgery i was so nervous at first my mouth became so dry, then ofcourse the drugs kicked in and did not help..... I thought i would share with ya, and as i say we may not feel well but darn it if we dont look good! Sam

Oh and i rarely ever sweat, i get realllllllllllllllllll red like a tomato, and i hardly ever have a fever...... This last attack caused my WBC to be 15.0 and i did not have a fever! I get fevers at like weird times that last for maybe an hour then go away..... There is no rhyme or reason to my body but i am trying find out!
 
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