ALS Support Community

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ivonne615512
how long have you been having symptoms for?
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Fasciculation1
Oh wow, you and I are having VERY similar issues. I started twitching 17 mos ago. First two emgs clean, third showing only chronic denervation in one muscle and the fourth showing chronic in several muscles and positive sharp waves now in one.
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Fasciculation1
I have my fifth EMG next month. Numerous MRIs and none of them can explain my denervation.
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ivonne615512
yes thats why your case caught my attention we have similar issues, what does your neurologist think? this wait and see game is horrible:( best wishes on your next emg
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Fasciculation1
Thanks. I’m pretty anxious about my next EMG. I’m being seen at UC San Francisco. My neuro hasn’t said a lot outside of the fact I have some lower motor neuron signs (twitches, atrophy and hyporeflexes). No upper motor neuron signs. At my last appt., she wouldn’t give me any percentages of it being als. Basically it’s wait and see. She wanted me to try ivig, to rule-out MMN
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Fasciculation1
However, I decided to wait to try it until after my next EMG, as ivig can cause a lot of side effects and I don’t really think I have. It. The moderators here say EMGs can’t miss even early als, so, if they are right, I can’t have als, but I am obviously very concerned how my EMGs have become progressively more dirty and there’s no explanation for my atrophy.
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Fasciculation1
The wait and see is so hard. How about you? Where are you being seen? What’s your next step? I need to get a lumbar puncture this month, but otherwise have had almost every blood test and nothomg is turning up to explain my symptoms
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Fasciculation1
The wait and see is so hard. How about you? Where are you being seen? What’s your next step? I need to get a lumbar puncture this month, but otherwise have had almost every blood test and nothomg is turning up to explain my symptoms or atrophy. I see your from imperial. Is that imperial county, like El Centro? I’m in Fresno. I’ve seen numerous neuros, to include private practice Stanford and UCSF.
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ivonne615512
i would be too and im definitely nervous waiting for my next emg its in 6 months, i live in the city of imperial bit is right next to el centro, since we dont have neuromuscular specialist here i go to san diego scripps clinic to see my neurologist, he is not very concern because i can basically so everything, but two neurologist prior to him said they saw atrophy:(
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ivonne615512
i follow a group on facebook called als under 50, and some patients are in their 20s like us, many had said that it took 2 to 3 years to be diagnosed since at first they had clean emgs and with time and some prgression they finilly bacame diagnosed
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ivonne615512
i guess als is so different from one person to another
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Fasciculation1
I’m the same as you. I have atrophy but no muscle function failure, yet. Interesting on the Facebook group under 50 and really interesting on the 2-3 years to get diagnosed. That directly conflicts with what the people say here about clean EMG equals no als.
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Fasciculation1
There is just so much conflicting info out there emgs and diagnoses in general, which makes it hard for us to just sit and wait.
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Fasciculation1
I was actually just in El Centro on Monday for work. Just as you’re having to do, I drive three hours to a neurologist at an ALS center in San Fran as there’s no one here in Fresno who knows anything about als
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ivonne615512
exactly its so conflicting, people here say clean emg equals no als, but ive seen other people path to being diagnosed and for many it took several emgs, at first being clean then progressing:( and its very frustrating seeing atrophy and feeling weaker and one neurologist saying one thing and then the
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ivonne615512
other saying something else, when you get your emg in feb let me know, ive been reading your posts for some time your case sounds so similar to mine, really hope that whats causing our symptoms turn out to ve something else
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ivonne615512
i know i had to make the 2 hour drive to San Diego because we dont have neuromuscular specialists here in the valley:(
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ivonne615512
i just try to stay positive and hope for the best🙏 what do you do to stop thinking about this?
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Fasciculation1
Ya. The conflicting info is just really crazy. I’ll let you know how my next EMG goes. As for not thinking about it, that’s soo very hard. When I’m at rest, I feel the twitches even more, so it’s like a constant reminder that’s tough to forget about. Anytime life is threatened, it’s hard to think about much else.
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Fasciculation1
However, distraction techniques can sometimes be helpful. I just found a new series on Netflix I’ve started to binge to try to get my mind off all this. Sometimes it works, sometimes it doesn’t.
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