Good Afternoon

[skins19]

I’m writing because, like many others here, have scary symptoms that won’t go away and are only getting worse with time.

My first symptoms appeared Dec ‘18 with cramping in my legs and a small twitch on the outside of my left foot. Slowly the twitching spread to my left ankle, then calf, then quad, then same progression with right leg. The spread of these twitches was about 2-3 months. In the first month I noticed the twitching I went to a neurologist tested me and performed an EMG which I would say was mostly normal, except that it showed a slight increase in amplitude in two muscles, as well as few polyphasic MUAPs in those same muscles.

Since that exam which was in December my twitches have gone from about 2-3 per minute to 40-60 per minute (I keep a journal) in my ankles and calves, and the twitches are now stronger and more complex. I do also get twitches in my shoulders, hands, forearms, stomach, chest, biceps, triceps, butt, back, and tongue, however these aren’t constant and usually go away after 5-10 seconds. An interesting symptom is when I squat down, my thigh muscles visibly quiver. This happens every time. The same thing happens to my arms but to a somewhat of a lesser degree.

I had a second neurologist appointment in March and he performed a quick EMG but only did 5 muscles and the summary was not nearly like the first one, it just said the muscles were within normal limits.

Beginning in May or June I’ve noticed my leg muscles appear stiffer, my thighs that is, which makes walking feel a little awkward. I should say that I’ve tried to workout but when I do my twitches are immediately stronger, I am very unsteady and shaky, and my body simply feels like I’m incapable of doing what I know I should be able to do in my head. I have tried every supplement there is and I also had a normal blood test initially with no deficiencies. I obviously stress a lot, but I don’t feel this is stress related because I am prescribed Klonopin, and I was on Zoloft for the first couple of months. I do have a family history of Alzheimer’s on my dads side.

Although I know I can’t self diagnose atrophy, I have a dent in my left lower leg, my thighs are definitely skinnier, and I have a dent in my left deltoid. One of the scarier things that I’ve noticed is that I can see my muscle fibers trembling and moving in my shoulders, hands, face when I move them. It’s like they are struggling to stay connected (sounds crazy). Finally I have a few symptoms that I believe may be anxiety but worth mentioning. I have been gagging/vomiting for no reason since this started, and my muscles tremor in my hand occasionally. This happens when I am eating or playing video games. My hand will shake when I bring the fork to my mouth or my finger will tremble when I push a button a certain way.

Curious to hear thoughts on what’s gioing on with me. Btw I have read the stickies and just about every new post on here before I registered. During a recent follow up with my neurologist in May he suggested I go to Johns Hopkins, as well as quit alcohol. Do these seem necessary?

 

[lgelb]

Klonopin is not something to just latch onto. Have you been diagnosed with anxiety? Are you in counseling? My first advice is to stop journaling twitches. It is not productive.

The Klonopin (benzodiazepine) class of meds, as well as the Zoloft class (SSRIs) can have its own movement-related side effects. So this gets into chicken vs. egg. However, any tapering should be medically supervised.

I would return to your PCP and discuss any potential health effects of everything you ingest, including alcohol, and to develop a plan to optimize nutrition, hydration, exercise, stress, sleep, etc, the most common sources of continuing twitching. Without an EMG report, it is difficult to decipher why your neuro would want to refer you to Hopkins, but you haven't reported anything that would lead us to concern about ALS.

Best,
Laurie

 

[affected]

Hi skins, I can strongly recommend you start here as it answers your questions quite thoroughly

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[skins19]

A psychiatrist prescribed Klonopin for anxiety and twitching (doesn’t help twitching).

 

[KarenNWendyn]

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. It doesn’t matter how much you twitch, or how fast. As Laurie said, focusing on the twitching is non-productive. Basically, you haven’t described ALS. So keep working with your doctors, but fortunately you’re in the wrong place here.

I’ll also note that alcohol can affect the central nervous system and can also cause a myopathy. So it may be a good idea to curtail the alcohol use at least until you get things sorted out.

 

[skins19]

Should I worry about the quivering muscles? Same category as twitching or something else? The outer and inner muscles of my thighs do it each and every time I squat for even a second, and the shaking is visible, can be felt easily, and simply disconcerting.

Or the fact that the initial EMG showed polyphasic MUAPs within a month of noticing the twitching?

 

[ShiftKicker]

Hi Skins, see your answers above. The recommendation you return to your family doctor still stands. The people have read your post and reported symptoms, etc very thoroughly and would have noted if something was concerning with regards to your symptoms and ALS. Please also re-read the link posted to you above that Tillie provided.

 

[skins19]

Thanks for the advice everyone. It seems strange the twitching has transformed into this monster of an annoyance. Has anybody ever read that after 7-8 months of just twitching that you’re in the clear? I feel as though I stumbled upon that in what seemed like a trust worthy source at one point. FYI I take magnesium, calcium, D3, B12, and a multivitamin, if that matters.

 

[KarenNWendyn]

Has anybody ever read that after 7-8 months of just twitching that you’re in the clear?

Ignore twitching. A diagnosis of ALS is not based on twitching in and of itself. You can twitch for a week, a month, a year, ten years, fifty years. It doesn’t matter. ALS is diagnosed based on a clinician finding true weakness along with characteristic EMG abnormalities, upper motor neuron signs, evidence of the above progressing over time, and ruling out disease mimics.

You haven’t described anything suggesting ALS. You don’t need to be here. Please work with your doctors to get your anxiety under control. And please reread the sticky attachment “read before posting” sent to you above.

 

[skins19]

Final question and I’ll jump off here and tackle my anxiety (although it lowers daily despite the twitching). My first EMG showed signs of “chronic reinnervation”, and I recently read a year old post by Karen that mentions that you don’t want to hear the “dreaded words reinnervation or dennervartion” and I think the thing that caused worry was the fact that she used the word “or” instead of “and” implying that either by themselves is dreaded. This combined with the obvious progression of twitches from feet to calves to quads and from 1-2 times a minute to literally rippling in calves and small flashes in quads has me a little uneasy. I know I’m anxious/obsessed/crazy maybe but I think for me I want advice whether to seek another doctor, or to succumb to a life of fireworks in my body that never end. If I search in YouTube muscle twitching my personal ones compare to the videos of the people showing their legs looking like they’re boiling and people commenting “holy s**t” essentially. Anyway I’m going to try and enjoy my weekend now (Eeyore voice). Thanks in advance to anyone that responds with advice, specifically the reinnervation (never broken/torn anything btw-knock on wood).

 

[KarenNWendyn]

I recently read a year old post by Karen that mentions that you don’t want to hear the “dreaded words reinnervation or dennervartion” and I think the thing that caused worry was the fact that she used the word “or” instead of “and” implying that either by themselves is dreaded.

You’re quoting me out of context. Denervation and/ or reinnervation is not specific for ALS. Far from it. One has to look at the big picture when diagnosing ALS — denervation and reinnervation on EMG in multiple muscle areas, demonstrable clinical weakness, upper motor neuron signs, ruling out ALS mimics, and demonstrating evidence of disease progression.

You’re trying to convince yourself you have ALS, and you don’t. Time to find another fascination.

 

[skins19]

I think you’re right in your last comment unfortunately. Brain is a powerful thing and mine has tricked me. Thanks Karen and everyone.

 

[skins19]

I woke up this morning and my quad muscle is visibly shaking and twitching walking, sitting, laying down. What does it mean when this happens when the muscle is moving? As I understand twitching is benign if it’s occurring in a relaxed state.

 

[ShiftKicker]

Skins, it's time to deal with your anxiety about your health. Please do not use this forum, which is a support forum for those diagnosed with ALS and their caregivers as a general health or anxiety resource. That is not its purpose.

Closing this thread. Please do not open another.