Arron or anyone who can help my fear??

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Arron or anyone who can help my fear??

Postby Dan on September 23rd, 2002, 1:35 am

Hi,

I'm a new guy to this site. Hopefully someone can help me out here. Especially Arron since he has pretty good knowledge about ALS.

Anyway, i'm a 26 year old male who has been twitching since early May. So, its been about 4 months and counting. I don't know exactly what brought it on, but i assume stress and anxiety. Oh, and i did read some stuff on the internet before it happened. Coincidence?

The twitching started in my thumbs and basically i freaked. I got a full fledge panic attack and the twitching quickly spread and intensified. Since then i have had twitching & jerking all over. I get all types of twitching (like most of you). The twitching also waxes & wanes, varying high or low in intensity. In addition, I had all kinds of symptoms such as tingling, aches, light cramps (feet, hands, biceps, shoulder blades) and various others. But mainly it has been the twitching. This all leading me to my main fear, ALS.

Back in the middle of June I had two physical neuro exams, an MRI, blood test and CAT scan which came out clear and normal. I have also had two EMGs from two different Neuros. Both said i had no abnormalities. It has been 3 months now since i have had an EMG. I was doing alright and finally coping with my twitching until now. Something new has come up that has persisted for about a month (since late August). My twitching has spread to my face. It effects all the bulbar areas.

The twitching intensifies when i am using a specific part. I can feel it in my cheeks & tongue when i talk, in my throat when i swallow, and jaw when i chew. Not all the time, but sometimes. And at times it does seem like i get fatigue or weak in these areas. I'm not really sure though.

Lately my tongue has been quivering/twitching like crazy. Not all the time, but more often than not. And I can truly say yes, it seems like it does effect my talking. At times, during prolonged conversations, i have to slow down my speech because my tongue gets fatigued. At least I believe it does. When its cold, its even worse. Sometimes i have to depend on different facial muscles to talk. I also examine my tongue and i think its getting smaller. But then again, that could just be my imagination since i haven't really checked in like 2 months. Another thing i have gotten lately is increased saliva and lots of tongue soreness. It feels like my tongue has been through the ringer.

Just to note

Positive things: 95% of the time i have no problems with chewing, swallowing (although a sense of fullness), or breathing. I have no dry coughs or hoarseness or slurring. I can flap and flutter my tongue with ease. I can swipe my tongue in all directions without no problems. Therefore i wonder if its all percieved.

Negative: Increased saliva, lots of tongue soreness, and what seems to be tongue fatigue that leads to the slowing of speech so i can articulate words easier. Has been pretty persistant for a month now, although it varies each day. Somedays are easier than others to talk.

My question to anyone (especially Arron): I have had two normal EMGs of the lower and upper limbs 3 months ago, but i can't help but thinking i have Bulbar onset. Would two normal EMGs in the limb areas be significant enough to justify i do not have ALS even with these new symptoms in the bulbar areas? Should i get checked out again or put my faith into the doctors? I heard something about EMGs of the bulbar areas?

Another question: I do get reflux and heartburn, so i wonder if increased Saliva can come from that? Or can come from anxiety, especially after reading bulbar symptoms?

Please help--Dan
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Postby Guest on September 23rd, 2002, 8:52 am

Relax, you don't have ALS. I can really sympathize with you as I went through the exact same thing. I think you may want to consider seeing a Psychiatrist to help deal with your real medical issue - anxiety.

I know it is hard, but you must look at this logically. From the Neurologists at the Cleveland Clinic (an ALS center), once twitching has started in ALS, there are always findings of denervation on an EMG. A clean EMG with twitching means you don't have ALS!!!!!! You're HEALTHY. Go to your Neuro and have him/her take a look at your throat and then believe him/her when they say that there is no sign of ALS.

I went through the bulbar stuff, too. I had the excess saliva, I had the sore tongue, I had the quivering-twitching tongue, my tongue looked smaller, it was tired feeling and my voice seemed weaker, I had a hard time swallowing food and it seemed to get stuck in the back of my throat. I would constantly test the strength of my tongue...it was awful and it was all in my head. Also, the fact that 95% of the time you're fine means you absolutely don't have ALS. It does not come and go. Once it starts, it gets nothing but worse.

You can get a bulbar EMG done if you need it for your peace of mind, but I'm sure that it will come back clean.

Never underestimate your minds ability to manufacture symptoms. You can go to medhelp.org and search for the posts from twitcher to get an idea of what I went through. I highly recommend not reading anything else. It will just make you more anxious. Plus, you're not a doctor. You can't self-diagnose over the Internet.

Reading your story reminds me so much of the h#ll that I went through. Please see someone about your mental state of mind. There are medications that can treat your anxiety. If you don't, I'm afraid you will do what I did; waste a year of your life making yourself sick over a disease you don't have.

BTW, acid reflux does cause excess saliva, though most of it is probably due to your stress level.

Good luck and keep us updated on your progress. I'm sure with time and help you will start to get back to normal.
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Postby SCOTT on September 23rd, 2002, 9:44 am

from cleavland clinic.

"WITHOUT MUSCLE WEAKNESS DEMONSTRATED ON NEUROLIGICAL EXAM, A NORMAL NEEDLE EMG STUDY YOU DO NOT HAVE ALS.

"FASCICULATIONS ARE THE END PART OF THE DISEASE NOT START.

"FASCICULATIONS WITHOUT WEAKNESS IS ALWAYS NOT ALS.
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