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New member
Feb 19, 2019
Learn about ALS
Mid 30's male, grandmother diagnosed at 73.

Began twitching in arm in early December, went away for a few weeks, came back in late December in left calf and r. arm, and felt like it was spreading each week: right calf, thighs, neck etc.. I twitch somewhere in my body every few seconds, for over 2 months. I had no other symptoms except twitching and some stiffness (perceived).

I mentioned to my GP, who dismissed it, but I insisted on seeing neuro. Saw neuro, who requested tests but thought I had nothing wrong after physical exam. GP didn't want me to do the tests, and instead prescribed SSRI for anti-anxiety. Once I took that I immediately had severe drowsiness, dilated pupils, tremors and leg weakness (right leg). After 4 days I had a significant limp and couldn't descend stairs without extreme care. Right leg was probably at 40% power. I got VERY worried and told my wife I have ALS.

Once I stopped taking the meds the strength came back, now at 100% (maybe 95%). I've since had a MRI (still waiting results), labs (benign) and clean EMG.

I feel really good, and the neuro that administered EMG said I was totally clear of ALS. They only needled my right leg in two areas (one thigh, one calf) and once in my right hand. I'm a little worried that they didn't do more like move the needle in and out, put it in more areas. It still causes me a little anxiety when I twitch (much less often since EMG resuts) and when I feel soreness / stiffness in my legs. I think I have soreness / stiffness in my right leg but don't feel it when I'm not thinking about it.

I'm still waiting my follow-up with the original neuro who will have MRI, EMG and lab results in hand.
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Very sorry to hear about your grandmother. Thanks for the reminder that SSRIs like any other CNS drugs can have severe side effects, so if something isn't right just after you start a new drug, it's time to stop/call your doc, and make sure the episode lands in your medical record as a drug sensitivity.

As for your EMG, ALS shows up in most muscles tested, and your history sounds nothing like ALS. Moreover, a neuro has found nothing wrong. As we tell so many people, movement-gone-wrong is often addressed effectively by the right movement -- things that lengthen your irritated muscles, from tai chi to swimming to ballet. Stress, sleep, nutrition and hydration are all part of that foundation, to help your body be its best.

The mind is very powerful and magnifies any abnormality once it shows up. But you have control over it -- when it threatens to take over, you can move past. Stop by after you see the neuro, but there is no need to worry about ALS.

I was ignorant when I was a late teenager. Knew my grandma had ALS but didn't really know what that meant. Wish I would have talked with her more, even when it was painful with her communications machine.

I feel much better from an anxiety perspective, and to the guy that has a similar situation, I really feel like my twitching decreased a ton once I felt that I was [99%] clear of ALS. I still feel it in my calves but before it was everywhere. I was so crazy that I thought I was having swallowing problems, and would have panic attacks where I would swallow water every 30 secs to test. In addition to my "final" neuro exam, I have a remote second opinion being done by a George Washington Univ. neuro who will have my reports, EMG, labs, MRI and virtual consult. I'm hoping that will put my mind at ease.
Please let us know how it goes for you after you receive the results. Till then, searching and posting here will only serve to increase your anxiety. A reminder you have already been provided with anxiety resources.
**** UPDATE ****

Had my final neuro consult who told me that I did not have ALS and to forget about the disease.

GW Univ. ALS Center also reviewed my case and found no evidence of ALS. Recommended follow-up EMG and nerve conduction study in 4 months due to family history of ALS. Said I might have BFS. While this was the best outcome, I don't like that it is not final. Was hoping for something along the lines of "No ALS, don't ask us again".

Received my labs and found I had a vitamin D deficiency.

Both docs (mine and GW) recommended I take mg supplement, sleep, and hydrate.

I have had less twitching over the past 2-3 weeks, and appears to be tied to exercise in some part. About 4-8 hours after exercise the frequency of twitching becomes much higher and lasts 1-2 days. Afterwards it slows down to a fairly normal (perhaps slightly elevated) amount. I try not to think about it, and normally can do so.

Thanks all, hope you have a great day.

One last thing. Three neuro's have determined that I don't have ALS ("at this time"). Instead I'm having additional labs and MRI done to determine if I have MS. Lesions, with some having MS characteristics, were found on my original MRI so now I'm going back for a second. I don't really have MS symptoms, aside from twitching / perceived stiffness, but apparently it's not uncommon for someone to get an MRI for something else and get identified as potential MS diagnosis.

Had second clinical exam with neuro and mentioned my very minor stiffness/soreness in right leg. Reflexes fine, no weakness, etc... Only had a slight intention tremor in arm that my neuro said could just be nothing (noted that they could have the same thing if examined). Said right leg was fine.

Obviously MS dx is much better than ALS. Still, I don't really want either. Have a good day.
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