Advice needed, please.

[VirginiaEMT]

Hello! I begin by thanking each of you for what you do. Day and and day out you answer the same questions over and over from people concerning about ALS, you support those going through a diagnosis, and are a valuable resource to families of PALS.
I read the requested link, answers to common concerns. It helped a ton but I had an additional question or two.

I’m 44. Three months ago I started to have muscle twitching in my calf muscles (95% R and 5% L). The twitching is about the same percentage today. They are never a jerking or spasm. Very fine, often I can only feel them but can’t seem them. There are times I can see a very fine twitch that affects an area and inch or so square. I hardly feel or notice them when I wake up but once up up and moving i notice. They are mostly random in frequency. I might twitch 10 or 15 times a minute then 1 once a minute then nothing for a minute or two.

I honestly wasn’t concern at all until my family and I were walking into a grocery in Myrtle Beach the the fire department was filling the boot for MDA and the ALS fear almost took my breath away.

The twitching has changed much in three months. I have no weakness based upon my gym visits. No atrophy when I measure my calves or thighs. My balance is fine.

I went to my PCP who did a quick neuro assessment (asked me to do two or three things) and kinda checked my reflexes (patellar and babinski). This was all normal. She did order a ton of labs (cbc, comp, magnesium, calcium, phosphorus, thyroid panel, vitamin b panel, vitamin d, and a CK. Everything returned within normal limited. I do take hctz for hypertension but no other health problems.

My PCP wants to wait and see me again in two months. Her theory is that if it’s something to be concerned about then at 5 months another sign or symptom should present itself. She didn’t feel like time was time for a EMG or a neuro referral. This seemed odd after 3 months.

My question is should I be pushing her harder for the referral or additional testing?

Also has anyone else experience an onset of symptoms similar to me? Twitching reports are very confusing. Some people say it can be the first others say it’s never the first.

I’ll be completely transparent and tell you that this scares the sh*t out of me. I probably think about this, research, read, study about als and symptoms 8 hours a day. I even called and had my life insurance increased out of fear that a potential diagnosis would affect future coverage.

It’s difficult to express the fear that this has brought to me. I twitch and instantly think of my 6 year old and his future.

Thank you, thank you, thank you in advance for reading my post and any reply. I can’t say thank you enough.

 

[Nikki J]

You read the sticky. You know what we will say. Twitching alone doesn’t matter. The majority of people will twitch at some point. Benign fasciculation syndrome seems rampant but maybe it is just that people are worrying about it and seeing doctors rather than ignoring it

Your doctor sounds very sensible. I can tell you that most people who get a referral and or emg end not being reassured in spite or normal emgs and exams. No early wrong muscles etc etc we hear. You are going to the gym and ? working. You had normal reflexes no atrophy. Work on managing your anxiety stop googling. You are far into the rabbit hole. Pull yourself out for your 6 yo. Spend time with him not mr google

The longer you twitch without any other symptoms the better. You may never not twitch but stepping away from the internet ,managing stress and keeping yourself well rested and nourished/ hydrated will help

Block this site and others

 

[VirginiaEMT]

Hi! Quick update. I got a call from my PCP and CK came back at 420 so she asked that I come back in for another quick assessment (yes it only been a few days). Today my Hoffman and babinski were normal but she noted that I had hyperreflexia at my knees.

She seemed a bit more concerned today. Twitching, CK 420, and hyperreflexia must have trigger something because she referred me to a physiatrist. I hadn’t heard of this type of doctor but she said they study muscle and nerves and that their schedule is usually more accommodating than a neuro for an EMG.

Thoughts on the combination of Twitching, CK 420, and hyperreflexia?

Just when my mind was starting to calm a little.

 

[lgelb]

Yes, some physiatrists (their Board cert is in physical medicine & rehabilitation) are qualified to do EMGs and it's true they're often less crowded.

My thoughts are, I would follow the recommendation. Still not overly concerned in re ALS, if that's what you're asking. But there are, for instance, adult-onset muscle diseases that she is likely looking to rule out.

 

[Clearwater AL]

Virginia, maybe I’m lecturing but it happens here often by others.

When it comes to people posting here about twitching, fasciculation.

We have no idea of their daily personal habits. Do they drink too
much coffee, drink energy drinks, certain OTC supplements, vape,
smoke pot, personal stress events from job/relationship with
someone, financial worry/stress. All or any can manifest twitching
then… the Health Anxiety spiral. Not saying you directly.

What’s frustrating is when they doubt what a PCP and even a
Neuro suggests or determines. The forum has a sticky that is very
extensive concerning twitching… so often it either isn’t read or it fails
to be convincing enough to at least circle back to their PCP for help.

I hope your doctors can sort this out for you soon… so you can go on
with life and enjoy your 6 year old son. It will be up to you to trust
what they determine.

 

[VirginiaEMT]

Thank you for your reply. I wasn’t familiar with this type of doctor. Everyone mentions a neurologist but never a physiatrists.

I’ll be the first to say that I have health anxiety on the normal but the twitches have taken it to a different level. You replies are very helpful to me. I am truly appreciative. I know some people get aggravated with the same questions but I can promise you that most everyone asking questions is just looking for comfort. Everyone who replies to all these messages are mental heroes.

 

[VirginiaEMT]

This might be a dumb question or my lack of understanding….

I saw the physiatrist (lucky to take a cancellation appointment) who completed a 4 limb EMG and nerve study. It was completely normal.

My twitching persists, no weakness or wasting. Repeat CK including CKMM was back in normal limits. My twitching seems to be more widespread this week (calves, thighs, occasionally arm or back).

The physiatrist suggested a repeat EMG in 3 months. I’m confused as to why? Everyone seems to agree that if I’m twitching then ALS like patterns would defiantly been seen on any EMG, even the first. Any idea why a repeat or can an EMG be to “early” or do I totally not understand an EMG. It seems lots of people have repeats even after an initial “clean” one.

I also talked to my doctor about my anxiety being a factor. She has prescribed me Buspirone to see if it helps. I have high hopes for it.

 

[Nikki J]

Covering themselves

Good luck with the buspar