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annmarie and Leslie:

I am very grateful for your concerns on my behalf. It is supremely comforting to know that there are others who truly understand my situation because they are dealing with similar issues.

Yes, I am in the process of preparing for the upcoming semester. In addition to on-campus classes, I also teach many sections on the internet.
Here are mine

1) the tinglng that felt like it was inside my head (October of last year- has since gone away)
2) pain upon urination (started 7 months ago)
3) eye twitch (went away- returns every now and then)
4)muscle twitches all over- mostly concentrated in my knees (come and go)
5) lump in throat- at night it is difficult to swallow
6) sometimes slurring words (no one else seems to notice- although today I said "calorie" instead of "gallery"
7) sometimes hoarse voice
Does anyone know why people have the feeling of a lump in the throat? I have had that feeling for a long time-- even had my esophagus dialated 2 times-- How does that relate to ALS and why does it happen?

That was my first symptom lasted about a year pat
Twitches along with Upper Motor neuron symptoms

ucla2004 said:
As mentioned before before twitches are fairly common, accompanied with cramps not as common but similarly plausible knowing that twitches are common in the population. I also get cramp-like feelings once in awhile. Whenever I am not doing anything and just lying in my bed I notice that I twitch 24/7. When I am extremely busy in clinic and not focusing on my body as much I do not notice my twitches. I think most of us are too focus on our body and notice every twitch the body throws at us. I know most people will say not to focus on our symptoms, but it is impossible to not focus on these symptoms because most of us these symptoms are experienced by ALS patients. I think one must try to find inner-peace however means. I notice weakness and cramping and twitches and tongue quivers but I choose not to focus on them. Who knows I might have the diagnosed of ALS along my years, but I choose not to focus on it as much. Chances are that I will die from something else and not ALS. There is a much great chance I will die from a car accident than die from ALS. I think out time should focus more on people who really need our services.

I've had upper motor neuron symptoms that started about 10-12 months ago (spasticity, weird gait, pain, muscle fatigue/trouble walking or standing for more than a few minutes, clonus, brisk reflexes initially just knee then arm, then hoffmans/tremnor, then jaw, some weakness on my left side). No twitches until about 6 months ago. Now they're pretty frequent & everywhere. At least one small twinge like twitch every 1-2 minutes & at least 10 large prolonged twitches an hour. Two ALS clinics have confirmed upper motor neuron disease, both docs seemed a little suprised when they observed the twitches, but EMGs have been normal. Any thoughts on twitches that develop along with UMN signs with normal EMGs? Biopsy had shown past denervation/reinneravation, large fiber type grouping, some polygonal atrophic fibers. No visual atrophy though & I just had a very thorough EMG that was completely normal. Seems weird to me.


ltr said:
I guess I would have more peace of mind if there were another adult in the house to help do those things for me and to leave my kids with. We all get peace of mind from different things. I definitely am having trouble finding it with this situation. But, thanks for the wish for it anyway!

ltr I feel for you,, a single mother trying to raise children is a difficult task at best of times . But trying to do it when you are feeling lousy, & worrying what will happen to them if you get worse. I can't begin to imagined how it must be . I am an old women & I have had a good life & can afford to be nonchalant &.carefree. You have my deepest sympathy for your situation. if you need a shoulder to cry on I'm your gal.. EM
Right on puzzled36! Itr, polyomyositis mimics als because it can cause muscle wasting also. When muscles waste they are going to twitch..... Did you ever get a EMG after your diagnosis of it? I read that EMG can support the diagnosis and biopsy confirms it... The wasting is just at a slower rate, and gets worse when you are sick, stressed or working too hard? Look up EMedicine about your condition.... I have taken on Cindy's point of view but deep down i feel like puzzled36 and this is the only place i can say that....... Most people are having a hard time dealing with a normal life let alone one with a illness, they do not want to hear complaining, questions etc about something that totally makes what they are going through seem trivial.....

This post got totally off subject, UCLA wanted to let people with twitches and twitches only do not mean ALS, and i think if you just have twitches and have looked up conditions associated and thought ALS, then you may have a problem that stems from your mind or emotions. I first looked up muscle atrophy, that lead me to twitching and cramping... I had severe charlie horse cramps for a year then it subsided and i thought nothing of it. Then where i had that i had twitching, thought nothing of it. Then i started having muscle atrophy in that area and realized that all those things matched together. Oh and a word of advice,,,,,,,,,,,, do not go to quacks for alternative therapy, i recently went to one who told me to tell my subconscious that i was okay, and after an hour of different sayings he asked if i felt better... I said no, and he suggested that i wanted to be sick and i almost decked the guy........ I worked hard to become what i am, i have aspirations that i cannot fullfill because my body wont let me, i never ever would WANT to be sick....... Come to find out this guy was a high school teacher who got into metaphysical stuff and had lots of girlfriends that found him so ENLIGHTENING!
Sammantha - your post made me laugh. Thanks! I have been there with the alternative therapy thing. I went to a reflexologist (just for relaxation to be honest) but he told me that I had a ton of negative energy around me and that he wanted to do reiki healing on me, or some other kind of energy healing. He waved crystals and tuning forks over me (no I am not kidding!) and wafted some kind of lit up herb around the room (which did nothing but remind me of my student days!). He told me that I should go home, light some basil and walk around my home with it to purge the house of negative energy fields. Believe it or not, as desperate as I felt that day, I did it. My neighbors thought I was smoking pot. I look back and laugh my head off about that now. Desperate times, desperate measures!
annmarie said:

wow that is odd, I myself have never heard of that, I have those same symptoms exactly, and also atrophy, I had a slightly abnormal emg, and will have another Monday which I expect to be very abnormal. I also have tongue twitching, and esophagal spasms and deep breathing problems.. The esoph problems started first. Clean emg, could it be a spinal cord problem? I hate the clonus and spasicity, I can only stand for a couple of minutes at a time, whenever people are standing around talking, I have to find the nearest chair, and the stiffness is another fun thing, really have that.

Hi Annmarie,

I've had normal spinal MRIs. I'm not sure about atrophy.. I've lost 15-20lbs since April but also stopped drinking beer (2-3 a day) and quit dairy. My biopsy in december had shown some atrophy, but if I do have atrophy it's very slight and not obvious or quick progressing. Others on the PLS forum have fasciculations too but they seem to be more localized & less frequent. Mine are everywhere - arms, legs, hands, stomach, chest butt, sometimes face.

How significant is your atrophy? Isn't it weird to have atrophy with just a slightly abnormal EMG?



Yes I had spinal tap.. negative for MS (just slightly elevated protein (47 vs high end of normal being 45 - but this is nonspecific), brain & spine MRIs showed no lesions. Neuro said if it had been MS lesions would have shown given the level of spasticity.

My next EMG is mid Sep & neuro appt end of Sep.. we'll see!
edna may said:
ltr I feel for you,, a single mother trying to raise children is a difficult task at best of times . But trying to do it when you are feeling lousy, & worrying what will happen to them if you get worse. I can't begin to imagined how it must be . I am an old women & I have had a good life & can afford to be nonchalant &.carefree. You have my deepest sympathy for your situation. if you need a shoulder to cry on I'm your gal.. EM

Edna May - thanks for understanding how I feel. Just when a person thinks they have been through it all, the worst happens. I know I have to get a grip and get our lives figured out before anything more happens. I just wish I knew how or where to start. The worrying definitely makes me feel worse.
Sam - my two EMG's have been clean, but one was the first week of symptoms and the other was one needle stick and mostly nerve conduction. No myopathy was seen. Polymyositis was noted on biopsy, but the doc said she didn't think i had that, only mild myopathy. She said most polymyositis patients can't walk and are sicker than me. I think she was rotten for saying that because she has no idea how bad it is for me and I don't think I should wait until things are as bad as she wants before she takes me seriously. My rheumo said that she was wrong about her assumption because my rheumo has several polymyo patients who walk the same as me! All the neuros have made it clear that fasciculations DO NOT happen with myopathy or polymyositis because there is no nerve loss, only muscle. The fasciculations are supposedly caused from misfiring of the nerve to the muscle, which doesn't happen with myopathy or polymyositis. This, and the fact that the treatment for polymyositis isn't working and I have progressed immensely, is the reason I am terrified.
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