Like many here, I come seeking advice. I have read all of the stickies and tried my best to "research" what I can about ALS. (I am a junior high science teacher, and the lack of answers and knowledge about the pathogenesis, etc. is baffling to me. But I should keep this short). Sorry).
About a year ago now, I developed severe chemical sensitivities which caused breathing problems, throat swelling, nose bleeds, etc. (For those who are unaware of what this is, as I was, it is a wacky neuroimmunological overraction to things that we mostly don't notice: perfume, detergent, etc. Not an allergy, per se). I was forced to stop working after 15 years (I was 38 at the time).
Well, the sensitivity improved (so I was able to return to work) but I started to get fasiculations. I had no idea what these were. Then neck weakness. To make a long story a little shorter, I finally ended up at UCSF where they did an EMG of my arm and leg. Did an exam. Brisk symmetrical reflexes +2, no clonus, normal arm/leg EMG. This happened in October.
I am still concerned, inspite of the clean EMG, that I may have early bulbar onset ALS. The doctor thought I'd be dead by now or seriously sick so no EMG of tongue, etc. (Twitching started Feb). But from what I've read here, some people had clean EMGS and had bulbar ALS. I guess time will tell, but I have an 8 year old daughter and my heart is breaking.
Here are my symptoms. (Yes, I told the doctor).
1. Fasciculations all over, but mostly in thigh by knee, upper arm, etc. mostly left side. And area on left side of mouth.
2. Increasing difficulty swallowing liquids. Not water, but anything like OJ, etc. just hangs out in the back of my throat. Did swallowing test, per dr at UCSF. Okay, except for thick liquids.
3. Lip "atrophy." Lips look smaller. Hard to whistle now, but can, sort of. But not loud anymore. And that is a great Junior High Teacher Survival Skill!
4. Uvula points to right. (To be fair, I never looked at it before this, so I can't say what it was up to!)
5. Aspirate after eating, especially (and sadly) chocolate. Got a fab case of pneumonia. Dr at UCSF ordered cystic fibrosis test for this reason. Negative.
6. Hiccup immediately after drinking Coke. One hiccup. Odd.
7. Increased gag reflex.
8. Crying episodes, decreased by Zoloft. (I'm not depressed. And I DON'T normally cry).
9. Severe shoulder/neck cramp on left side.
10. Exercise intolerance. (If I sit around I cramp less).
11. Jaw cramp.
12. Teeth chatter after I move my face muscles.
13. Losing bulk in hands, especially left.
Sorry. That was too long. But I would like to know if this sounds similar to anything you or your significant other went through.
Thank you.
"Lea Moore"
About a year ago now, I developed severe chemical sensitivities which caused breathing problems, throat swelling, nose bleeds, etc. (For those who are unaware of what this is, as I was, it is a wacky neuroimmunological overraction to things that we mostly don't notice: perfume, detergent, etc. Not an allergy, per se). I was forced to stop working after 15 years (I was 38 at the time).
Well, the sensitivity improved (so I was able to return to work) but I started to get fasiculations. I had no idea what these were. Then neck weakness. To make a long story a little shorter, I finally ended up at UCSF where they did an EMG of my arm and leg. Did an exam. Brisk symmetrical reflexes +2, no clonus, normal arm/leg EMG. This happened in October.
I am still concerned, inspite of the clean EMG, that I may have early bulbar onset ALS. The doctor thought I'd be dead by now or seriously sick so no EMG of tongue, etc. (Twitching started Feb). But from what I've read here, some people had clean EMGS and had bulbar ALS. I guess time will tell, but I have an 8 year old daughter and my heart is breaking.
Here are my symptoms. (Yes, I told the doctor).
1. Fasciculations all over, but mostly in thigh by knee, upper arm, etc. mostly left side. And area on left side of mouth.
2. Increasing difficulty swallowing liquids. Not water, but anything like OJ, etc. just hangs out in the back of my throat. Did swallowing test, per dr at UCSF. Okay, except for thick liquids.
3. Lip "atrophy." Lips look smaller. Hard to whistle now, but can, sort of. But not loud anymore. And that is a great Junior High Teacher Survival Skill!
4. Uvula points to right. (To be fair, I never looked at it before this, so I can't say what it was up to!)
5. Aspirate after eating, especially (and sadly) chocolate. Got a fab case of pneumonia. Dr at UCSF ordered cystic fibrosis test for this reason. Negative.
6. Hiccup immediately after drinking Coke. One hiccup. Odd.
7. Increased gag reflex.
8. Crying episodes, decreased by Zoloft. (I'm not depressed. And I DON'T normally cry).
9. Severe shoulder/neck cramp on left side.
10. Exercise intolerance. (If I sit around I cramp less).
11. Jaw cramp.
12. Teeth chatter after I move my face muscles.
13. Losing bulk in hands, especially left.
Sorry. That was too long. But I would like to know if this sounds similar to anything you or your significant other went through.
Thank you.
"Lea Moore"