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Bluegrass boy

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First, I just want to thank anyone for any reply. I understand the energy some members of this forum expend just to try and ease the minds of concerned people like myself.

I guess I should start by describing the last few months for me. In August, I decided to see a neurologist because of a tremor type feeling in my hand that I can only describe now (after researching for a few weeks) as myoclonus because my wrist muscle contracts and relaxes extremely rapidly while holding something. This has happened only a handful of times though.

What really made me want to see a neuro was my dominant hand index finger twitching from left to right instead of the up and down twitches that I had felt my whole life. This was accompanied by my bottom lip quivering like I could only describe as the feeling when you are crying and lose control of your lip.

My neurologist appointment went "well" as far as he implied. I passed his physical exam with flying colors- held my fingers as close as possible without touching, pushed back with all my extremities, walked from toe to heel and down the hall just fine. He wanted me to do a DAT scan and EMG for my own "peace of mind" he said for a couple of episodes I had described to him as almost passing out once while in a play and once in a movie theater. I just took the EMG last week and have not yet heard the results. My insurance would not cover the DAT scan so I'm not planning on getting it. I also think he recommended these tests because I originally brought up to him my thinking it could be Parkinsons though I had no idea what was going on.

I apologize for breaking the rules of this page and am posting though I can almost certainly say I have no true "clinical" weakness that I can tell. My limbs and extremities still function properly as far as I know.

The weakness that I do have has been in my dominant side (right) calf and leg. I've noticed it when driving home after a day of work- my leg will shake and feel extremely tired while pressing the gas and brake pedals. My right side shoulder has also felt extremely weak- like I can't keep a great posture and it droops slightly lower than my other which my GP said was fine. I shake pretty violently when doing any form of exercise like push-ups. I can still run thankfully although my right calf and leg take longer to recover compared to my left.

I know they say that fasciculations are not anything in ALS but, like most, we can always find an article or forum post that says otherwise even though they might be the exception to the rule.

Well, my right calf has been twitching for 3 weeks now, mostly in the same spot- most of the day and night. I've also felt twitches all over my body in random spots anywhere you can think of. These twitches feel extremely fine or pin-pointed.

Twitches don't usually bother me because I've had them for years but what has really brought me to write is the twitching in my right calf that, when flexed, looks like rapid ripples that I cannot feel but can definitely see and they look extremely small and fine. They're in about the same spot that I feel my calf twitch all the time. I've never noticed a twitch or ripple like these before and had not noticed these before my neuro appointment or I would have asked the doctor about them.

I also drop things daily but still have lots of pressure in my fingers and strength seems normal to strong. When breathing through my nose I have to finish my breath with my mouth open and often feel like I have to move my body to complete a yawn or breath. My voice is also cracking almost daily and I'm clearing my throat of phlegm all day long.

If anyone could give any advice on what these small ripple like twitches are or point me in any good direction I would be greatly appreciative. Has anyone seen these types of twitches before?

Please know that you all are in my prayers every day!
 

Atsugi

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There are many things you described that have nothing to do with ALS. I'm not convinced there's any ALS going on there. Your symptoms are pretty common, but ALS is a rare disease. Rule out everything else first.

Really, twitches are so common they are not diagnostic of anything. No doctor is going to see twitches and think of ALS. Healthy people twitch. It happens at any age in life, but is more common as we age.

Clinical weakness is the hallmark of ALS. This is profound weakness such as you can NOT lift your foot off the floor. The very quick and simple exam that a doctor does is surprisingly good at detecting weakness.

The gold standard test is the EMG. Wait for the results.

Another thing you have going for you is your age. I recently saw a database of 1800 people who have ALS. Not a single one was as young as you. A 25-year-old with ALS would be quite remarkable. I just wouldn't worry about ALS if I were you.

You might have something going on that needs treatment. I don't know. I can't diagnose you because I not a doctor. But I know ALS fairly well and your description didn't sound like it.
 

Bluegrass boy

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Thank you for your response Atsugi. I'm not currently scheduled to get an EMG but I will definitely get one scheduled.
 

Green Queen

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Hang on, you said you've had an EMG and are waiting for the results?

Please don't be a time waster. Lots here don't have time available to waste.

Also just for the record please don't tell your highly trained, very learned neuro what Dr Internet thinks is wrong with you. Your first visit to a neuro should not be your second opinion.

All the best.
 

Atsugi

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"I'm not currently scheduled to get an EMG but I will definitely get one scheduled." --Bluegrass boy

Nope. You had one. That's all you need.
 

Bluegrass boy

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I'm sorry if I had a typo. I've had an MRI with and without contrast that came back clear and I had an EEG to test for epilepsy or seizures that I have not heard back about the results. My continual calf twitch was not happening when I went for my initial neuro appointment but has been going for about 5 weeks now. The ripples that I can't feel in both calves have me worried and twitching all over my body except my face makes me want to schedule an EMG.

Another reason that I originally went to the neuro was because I lost 10 pounds in what seemed to be over night that I have been able to put back a few pounds of since then.
 
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