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mddarr

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I posted two years ago but was unable to post on that thread but it had been closed.

During the time between then and now for the most part I was able to move on from my fears of ALS. However that has changed recently as I have developed a mild slur, not noticed by normal folks but was definitely confirmed by the speech pathologist, and my tongue is twitching like crazy.

Along w/ mild slurring / changes in my speech I have FREQUENT spasms throughout my face, throat, tongue and neck, legs

This going along w/ constant muscle spasms & fasiculations throughout my entire body that have not for a single second stopped since they began January 2017. Frequent myoclonic jerking which moves my legs or my finger, or at times jolts my entire body. I require a heavy dose of sleep aids + clonazapam to sleep at night for the last two years as my physical symptoms produce great discomfort.

REASONS TO BE CONCERNED:
- Increasing bulbar symptoms, mildly slurred speech
- constant tongue fasiculations (tongue at rest not protruding out of my mouth) looks like it is rippling and occasional writhes and jerks about before settling back down to ripple some more.
- spasms in my throat, face & neck (bulbar area)
- occasionally drop things such as my phone, my clothes as I am getting dressed, stumble slightly. ]



REASONS NOT TO BE CONCERENED:
- I have had several EMGs that were normal
- I am still on the good side of 30
- I am still active
- myoclonus is not generally a sign of ALS
- I have had symptoms for 2 years and am still walking breathing etc, of course the disease is unique in everyone


I am seeing a new neurologist on March 11th, as the one who I had been seeing was clearly dismissing me, did not observe my tongue long enough to see it clearly twitching.

I already know what y'all are gonna say. That doesn't sound like ALS to me blah blah blah blah. Go ahead and say it. I have VERY GOOD reason to be concerned about a slow progressing MND. Tongue spasms such as I am having are NOT normal. I had an MRI a few summers ago which showed nothing, blood work nothing etc. You are also going to tell that normal EMG means NO ALS with which I counter with stories on this forum of people who had clean EMG's and went on to be diagnosed w/ MND.


So if I already know what y'all are going to say, then why am I posting in the first place? Well because I'm scared.
 

ShiftKicker

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Past post here: https://www.alsforums.com/forum/do-i-have-als-als/39059-27-normal-emg-not-reassured-slightest.html

You list all sorts of things that have you worried, but you do not mention what the doctors have said about them. Some people think their doctors are dismissing them, but really, their neurologist is just saying they don't have ALS and that person can't accept it. There are so many other conditions that cause a whole variety of symptoms- it doesn't have to be ALS. There is a partial list here: https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html if you read the whole thing.

I will also note that those who may have been diagnosed with ALS after an initial clear emg had something very obviously neurologically wrong with them and they were under the care of and being monitored by neurologists because of it.

So, there's not much this forum can do for you at this time. You are convinced you have ALS. Your last neuro was not. You are seeing another neuro on the 11th of March. This new neuro is the person you should be speaking to about all your symptoms and asking them for their feedback.
 

mddarr

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well I woulden't say that I am convinced that i have ALS, but far from convinced that i do NOT have ALS.

the neurologist said he thought i had benign fasiculations & myoclonus/cramping + a boat load of anxiety. I won't deny I have anxiety but the anxiety is a result of the symptoms and not the other way around. I was not experiencing anxiety or large amounts of stress when this began. My symptoms seem to be very extreme to be benign fasiculations, I would think that they would come and go, not be continuous for two years.

You are right, I need to talk to the neurologist in 3 weeks.
 
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