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Hello all, I'll keep this short in case I'm in the wrong website.
I've read the stickies here, my posting is fear driven because I'm not sure if my symptoms are relevant to ALS or not.

I'm 48, prior US military, male, in generally good health but have high blood pressure/elevated cholesterol that I take meds for as of February 2018. I currently live in Bangkok Thailand.

Twitching: I had a twitching experience in early 2016. Twitching all over the body including stomach for about 3-5 weeks. It resolved itself. Not sure if that's relevant here.

2018: 2nd week in January my right thumb started twitching. I hadn't experienced that previously. Within 2 weeks it moved to the left hand middle finger, and twitching on my right bicep, tricep and forum area began. It lasted for about 4 weeks. I got scared so straightened up my diet, eliminated all caffeine, and started exercising daily. For a few weeks I didn't have twitches.

In early March the twitching began again, same as before. Daily twitching in right thumb, bicep, forearm, tricep and otherwise spread throughout the body (both quads, back, etc.) I don't seem to have twitches below the knee in either leg. I play guitar daily and exercise (run, bike, calisthenics) daily, so didn't feel as much concern because I don't have other symptoms to speak of: no discernible weakness, voice issues, etc. I feel the twitches most at night, and rarely if ever during exercise. They do happen every night though and are I can notice them at rest during the day. However, what caught my attention was that in Mid-March my right thumb started to go beyond twitching. It moves occasionally through the day on its own, I suppose this would be a tremor? It has continued to do that for the last several weeks. It doesn't generally last long enough for me to try to control it, but I'm concerned that this might develop into or be a first sign or step of clinical weakness. I now have similar forearm twitches in my left arm to what I first experienced with the right arm 2 months ago. The pattern of movement concerns me, as I I may or may not have other twitches but the right arm movements are consistent daily and my left 3rd finger twitches now as does the left tricep sometimes as well. As I understand it ALS starts in one area and spreads. I don't have weakness yet but do feel that these twitches and movements are getting progressively stronger as time goes on.

I went to a Thai Neurologist at a local hospital April 2 to get looked at. He listened to what I told him and said it didn't sound like anything serious. He didn't physically examine me and I showed him my right tricep twitching. He basically told me he thought it wasn't anything serious, said to give it time and if I still felt like further investigations were warranted to come back and see him again. He prescribed Orphenadrine/Paracetamol, Rivotril, and Fluvoxamine. He said it's not likely to be Parkinson's as that manifests later generally and he showed a shaking hand motion that he said was typical of beginning symptoms. He also said that ALS was rare. He also told me to look up BFS on the internet. I don't think he took the situation seriously. I haven't been back yet but may return later this week. I ordered a magnesium/calcium supplement that I'll try this week just in case there's a deficiency in my healthy diet that I'm not aware of.

I'm not sure what action to take at this point. Something is obviously not right, and the thumb movements/tremors/ are most disturbing for me, as I've started feeling that losing control of the thumb movement could be a precursor to clinical weakness. It certainly does not get better each day. Should I wait until a foot drop or other obvious weakness manifests itself to have it looked at further?

I'd appreciate any input from the forum members; I'm scared and anxious like every other poster but trying to maintain calm. Thanks.

Mike
 

KimT

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Hi Mike,

So the doctor prescribed you an antidepressant, anti-anxiety med, and an older drug used for Parkinson's that supposedly works on movement and pain. The SSRI will most likely take a month to kick in. Sometimes when you first go on SSRIs and Orphenadrine, you can experienced increased anxiety.

Your post doesn't sound like ALS. Did he do any blood work like testing your Vitamin D, B-12, CBC, etc?

You know from reading the stickies that twitches are so common that they mean nothing. When you twitch, digits can move.

Lack of good sleep, overexercising, dehydration, stress, caffeine and other things can make twitches worse or even cause them.

If you are still stressed out, go to a GP and get some blood work done.
 
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Hello Kim, thanks for the reply.

The neurologist didn't order any tests at all, as he felt that I didn't have anything serious, that no other symptoms were presenting, and that I was overtly anxious. He told me to come back if other symptoms present, if I felt continued anxiety (to continue prescriptions) or if I just felt that I wanted to conduct further tests but that he didn't see the need for them at the time.

I take it the thumb jumping is in the same category as basic twitches? I see it as worsening of a condition, but maybe not in the context of ALS?

I had an online consultation with a neurologist, who said that my issues point towards carpal tunnel syndrome or a pinched nerve. I'll visit an orthopedic doctor and explore those avenues this week. Thanks in advance to anyone who comments or replies, I realize I'm one of many anxious posters here with probably not much to fear.
 

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Hey, Mike.

That's stress. Probably unconscious. Fear of something happening in your life, perhaps. The orthopod can't fix that. See a GP or a shrink.

Getting hot over there. Gatorade each day.
 
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Thanks for the reply.

I wanted to see an orthopedic to see if a pinched nerve was contributing to my issues. Apparently a pinched C6/C7 could explain the twitching in my right arm and movement of thumb. I absolutely agree that stress and anxiety can and do exacerbate my condition, but I'm equally sure that the root of the problem has a physical cause. My shoulder hurts and I've had shoulder problems in the past, caused by bad sleeping position, stretching too far, hunched guitar playing, trying too hard with lat pulldowns, etc. and that has caused numbness in my arm and pins/needles in the past, but never twitching or thumb movement so I'm trying to shed light on whether this is similar (a movement issue) or something completely different ie ALS or something like it.

It's been 95-96 degrees every day lately in Bangkok (today a bit cooler), I drink a minimum of 100 ounces of water a day probably closer to 125, no caffeine intake.

I take any input from forum members here seriously. I don't think a shrink is needed, I'm not looking for any validation that I have ALS or wish for that. I'm not a hypochondriac or usually a stressed out person. However, I've never had unclear health issues in the past so this twitching and jumping is completely new territory for me. I just consider ALS one of many conditions that I could potentially have and want to rule that out.
 

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Anxiousbut... (to shorten your screen name just a little. :)) as you wrote,

"I don't think a shrink is needed, I'm not looking for any validation that I have ALS or wish for that. I'm not a hypochondriac or usually a stressed out person."

Anxiuosbut... it's called denial.

As per your neurologist...

"The neurologist didn't order any tests at all, as he felt that I didn't have anything serious, that no other symptoms were presenting, and that I was overtly anxious."

You had consultation with a neurologist April 2 of some time and online consultation with another. Neither had any concern of you having ALS.

Let it go. You're good to go... from here.
 
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I agree 100%, no one has said anything points to ALS that I've consulted with. On the other hand, neither of these neurologists looked at me physically, other than the one to observe my tricep twitch. I got the feeling that a physical examination was not covered in the basic consultation.

Thumb twitching has mostly subsided now but seems to have settled in to my right bicep, which twitches frequently through the whole day and upon waking as well. Last month it was more the right tricep. I get very occasional twitches in the left bicep or forearm. Do these patterns matter at all?

I'm in the gym daily doing basic running, biking and pushups situps with no problems. I get alot of popping when doing pushups now, which wasn't the case at this time last year. I don't feel any twitching during exercise, but lately feel the bicep twitching shortly after stopping, even when it's just running/biking. I've not seen anything about whether ALS twitches stop during exercise as BFS twitches seem to or not. When my bicep twitches if I flex it the twitch stops. I'd appreciate any clarity from the forum.

Related question that I'm not clear on, is there any standard length of time on how long between start of fasciculations and no other symptoms showing up in which someone can be considered "unlikely to have MND"?

I'm less anxious than I was previously, but these are peace-of-mind questions I'd like to ask here. I'm in Thailand but will be visiting home in Syracuse New York this month and will have a VA GP give me a general health check at that time, see what he says and go from there.
 

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As I was reading through your posts, I wondered why you hadn't seen a GP. Hopefully, you can get some blood work done.

My personal experience is that when my thumb starts twitching, I can't get it to stop no matter how much I move it or manipulate my arm.

If I were you, I'd take ALS off the table and follow up with a GP.
 
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My thumb or fingers don’t twitch long or often enough for me to test whether I can control them or not, but bicep, forearm or tricep twitches seem a bit longer and more consistent. They’ happen often so it’s easier to test them. None of those muscles twitch while I’m flexing them or during exercise, they may shake from effort though. Concerned about muscle atrophy also as when I compare arms the left has a bit more size/definition, but pushups are still not a problem.

I’ll be seeing a GP for a general exam on the 15th. I’d be thrilled to hear that my right arm twitching is shoulder or nerve related and that ALS isn’t a concern.

Here in thailand I have very basic insurance coverage so wanted to see a neurologist in case I had to pay out of pocket for more than one basic consultation that day.
 
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So I'm back with a few more questions:

I've been experiencing jerking motions while falling asleep this past week. It can be my shoulder, leg or even my head that jerks. It only happens while I'm trying to sleep. Is this common here? I've never heard about this in relation to ALS?

Caffeine or exercise influence on twitching: as I understand it ALS twitches don't really have triggers? I try to go to the gym nightly every day and the time between when I get home afterwards and sleeping seems to be the worst for twitches. Last night I had a rare Diet Coke (no calories after workout but still thirsty) and all twitches seemed to go into overdrive when I was trying to sleep, as well as internal buzzing and vibrations. Is this typical of members here?

I'm still concerned about consistent bicep and tricep twitching as I've read that some PALS started with that. On the other hand the thumb twitching I mentioned at the start of my post doesn't happen often over the last month at all. Is twitching location consistent with PALS until the muscle dies? I still don't seem to have weakness but check often for it and/or atrophy.

Visit with GP in New York is still on for May 15.
 

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Try going off all caffeine and stay hydrated. Your GP will figure it out.
 

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I don't believe in antidepressants and anxiolytics (yours is a benzo) as a "grab these rx and get out of my office" tactic. In addition to affecting sleep, mood, and whatnot (and not always for the better, esp. if you don't need them), they can both contribute to twitching and such. If you don't feel unusually depressed or anxious, I'd titrate both down and see where that leaves you, under medical supervision such as a primary care doc. The VA doc you'll be seeing next week would be someone to bounce this off.

An EMG doesn't seem like a terrible idea, and the VA will pay for it, no? I agree it's most likely (#2 probability after the likelihood that all is well) that you have some kind of localized injury. As you point out, twitches that fade and don't leave weakness behind have nothing to do with ALS.

Too much water w/o electrolyte replacement is bad, of course. I presume you have that in hand and are not draining out all your nutrients in the heat...the response to Diet Coke could be caffeine, or carbonation, which affects some people as they age, even sensitivity to the chemicals. Or nothing...

Let us know how your appointment goes. I don't think we have much to add till then.

Best,
Laurie
 
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Thanks for the replies. Other than my slip the other night, I’m caffeine free. I also didn’t refill prescriptions for the antidepressants so I’m not on those any more and don’t plan to be again. I agree with Laurie, these are last resort meds for me for if/when anxiety is overwhelming. I’m not at that point.

I hadn’t really considered electrolytes as I started a magnesium/calcium supplement and eat a banana or two daily, but sweating is a way of life here, maybe they have a role in my condition. I drink over 100 oz of water daily but with gym activity I’m still not overly hydrated for sure.

I’ll ask the GP about blood and/or EMG tests, , not sure of the copayment on these but I will absolutely look into it based on the GP’s recommendations. I’ll post the appointment results.
 
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I have a concern about weakness... I can still do push-ups although left elbow is sore and pops for some reason now, but what really concerns me is that I can’t Flex and hold my right bicep without shaking, and the left I can handle with no problem. This frightens me, is it typical? I have no issues with hand strength that I can see.
 

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Anxiuosbutt... (again just to shorten your screen name) as you posted above...

"I can still do push-ups although left elbow is sore and pops for some reason now,"

You have no idea how many muscles are employed to do a push up... from your feet, to your calves, to your thighs, to your abdomen, to your torso, to your shoulders, to your arms, to your hands, to your
fingers and even your thumb to a degree.

If your GP refers you to a Neurologist (again) tell the Neuro you are anxious that you have the onset of ALS.

If you go to a Neurologist (again)... please do a push up and see how the rest of that appointment goes.

Please cease any further posts until you have been seen by a Neurologist before this Thread goes to 2 pages.

Follow through with your doctors. Don't forget... do a push up in the Neuro's office. :)
 
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