Age 50 with twitching over a month.

[Bella04]

Hi friends. May I please ask for your knowledge on my current symptoms which concern me regarding ALS? I have read the stickies about twitching. It seems I may be a little older than most who ask about twitching- I am 50. Thanks in advance for your time, energy, and thoughtfulness.

To preface, in late December I got out of bed with bad pain and tightness in low back and upper backs of thighs. It became painful to sit and I also developed pain, numbness and tingling in my perineal area, and bladder urgency. This lasted about 3 weeks, and I thought I had pudental neuralgia- a good friend has this, and I had all the symptoms.

I went to an ortho dr. and had a lumbar MRI. This revealed a couple of bulging discs and some spinal stenosis. However, the ortho dr. was unsure of why the pain was in my perineal area. Additionally, a gynecologist visit and pelvic ultrasound revealed nothing.

Strangely, after 3 weeks of this pain and stress, the pain subsided. Two days later, I began feeling a crawling feeling in both legs, and the muscles started twitching. A few days later my right lower eyelid was twitching off and on for a couple days, and random muscles began twitching all over: glutes, thumb, biceps, shoulders, lats, sides… legs still twitching. Firing at different times, mostly brief twitches, but some hotspots.

I made an appointment with a neurologist who specializes in ALS- he stays booked, so was able to see a different neurologist in the meantime (one week from twitching onset). He ordered MRIs and EMG, and noted that all limb reflexes were “a little brisk.” Rest of clinical exam was fine. (All tests were for future and I haven’t had them done yet).

A couple weeks later I was able to see the original neurologist I wanted who lists ALS as a specialty. I explained my symptoms and he did a more thorough exam. He said my reflexes were fine and not “abnormally brisk.” He also said that for NMD he looks for lack of reflexes in the knees. Still no weakness. He said given my history and exam, he strongly believes I have benign fasiculation syndrome. He explained that even though someone with ALS may present with just twitching, the twitching isn’t like what I’m experiencing. He said it doesn’t bounce around in a brief way- it stays a while in one place. That is becomes widespread later in the disease. He said if this twitching (for one month) was due to ALS that “I would know.” He believes this was brought on by extreme stress from my previous pain. He did not feel it necessary to do an EMG or MRIs at that time, but said he’s schedule one to ease my mind, though he thinks it will be clean. I scheduled the EMG for beginning of April.

Currently (one month and one week later), the twitches are now less in my trunk and arms but more in my legs and feet- particularly left leg and feet. I can actually see the fine, fast twitches in my inner feet and thighs- very strange and upsetting. So sorry for the lengthy post but wanted to be thorough. I am still very worried. Not sure what to make of all this. Prayers and blessings, and thank you for your input.

 

[lgelb]

I agree with the neuro that ALS isn't in this picture. Often you can influence the twitches through changes/attention to diet, sleep, hydration and exercise that elongate the muscles, like tai chi, classical stretch, Pilates and the like. I expect your EMG will be reassuring.

 

[Bella04]

Thank you. Hopefully so, I just have so many twitches, so frequent. If it is BFS, it’s hard to understand how it can cause frequent and ongoing twitching where before there weren’t any.

 

[Nikki J]

That is what bfs is. And whatever the cause the more you focus on it the worse it will be. Keep busy and do fun things.

 

[Bella04]

Thanks Nikki J. I have honestly been struggling with this. And over the past few days, the majority of the twitching has settled into my left foot and calf/leg- throughout the day and night. I still have frequent twitches in other muscles all over (including torso), but not nearly as much as in my left leg and foot now. After updating my neurologist of this, he says to definitely proceed with the emg and nerve conduction, (as opposed to during my appointment a week and a half ago when he seemed less concerned). This makes me even more anxious. Also can’t help but to think my age (50) puts me more at risk for ALS than BFS. It’s hard to know what to make of all this. I just keep praying and asking others to do the same .

 

[lgelb]

It is more likely that the neurologist is responding to your concern rather than feeling more on his side. The odds are still very much in your favor.

 

[Bella04]

Thank you for your response Lgelb.

 

[Bella04]

Hi all,

I just want to reach out and connect, and any insight you may offer would be appreciated. Still sending prayers your way. Thank you for reading (if you choose to) and your kindness and energy.

I am still having continual muscle twitching day/night. The majority is in my feet, legs, glutes, and some in sides. Been 7 weeks now. Have an Emg scheduled for second week in April, and I’ve never been so afraid. Only other symptom is feeling lightheaded some- upper neck is tight, probably due to stress and anxiety, which has been through the roof.

I’ve read so many of your stories, with initial symptoms, etc. A number of them do tell of twitching as the first symptom. Some also tell of cramping and/or pain as a first symptom. I’ve had both, though not at the same time that I’m aware of (first cramping/pain for about 3 weeks in low back, buttocks, and thighs, which subsided, then twitching began in legs 2 days later and was widespread in 4 days).

No one can predict the future or tell me if it’s ALS, I know. I’m also part of a BFS group. I can relate to their symptoms, but their twitching and cramping seem to be simultaneous. I strangely had cramping/pain first that subsided, then fasiculations started and haven’t really had the cramping and pain since.

I know I’m only 7 weeks in with twitching. But it’s unlike anything I’ve ever experienced, and I’m extremely worried that it’s an early symptom of ALS.

Again, any advice or insight is much appreciated. I have seen my doctor for the anxiety. Trying to determine the best medication for it. Prayers to all

 

[lgelb]

The two things might not be connected, or very connected via a virus, even if you never tested positive for anything. Widespread twitching in a short period of time is a strong argument against ALS.

While you're waiting for the EMG, I would live your life fully, and try multiple approaches to anxiety on top of any meds, like nature walks, socializing, your favorite pastimes, etc.

If the EMG is negative, your PCP can follow you and recommend any appropriate referrals should things change.

The fact that your history might not align exactly with what you're reading of BFS doesn't change that it doesn't align with ALS.

Fortunately.

 

[Bella04]

Lgelb, thank you for putting this in perspective.

 

[Bella04]

lgelb and Nikki J, you’ve been so kind to respond to my concerns- thank you . It’s not easy finding others to connect with on what I’m experiencing. Well, I am still twitching a lot. Still a LOT in feet and calves, had some in abdomen, chest, and left hamstrings for half the day yesterday. It’s been 7 weeks since it’s started and hasn’t stopped. As I’m sure you’re aware of, I am concerned and terrified. Still a few weeks away from Emg.

I’m trying to be strong and it is hard. I did find it interesting that the ALS neuro was not concerned about my knee reflexes being brisk- he said he looks for absent reflexes there. So much online talks about hyperreflexia, but I’ve read that hyporeflexia in the knees is concerning as well. Ugh.

Would it be ok for me to ask, given your experience with ALS, for your opinion? (And of others experienced who want to respond). People in my circle are not familiar with ALS at all. Im trying to get the courage together for my upcoming Emg. Age 50, 7 weeks of body-wide twitching (including some hot spots), and brisk knee reflexes- oh, and the ANA on my bloodwork was positive, but the rest of the autoimmune bloodwork was fine. With all this, how concerning do you feel this is? I think, I have/am having so much twitching that it’s hard to imagine an Emg coming back clean. Obviously I’m very worried, but I would value your opinions around this.

Thank you Even though I don’t know any of you, I’ve been keeping you all in my prayers.

 

[Bestfriends14]

But... you've had your answer many, many times that this is nothing to do with ALS. This is an ALS forum and not a general health diagnostic forum. As such, I'm not sure you'll find the answers to whatever it is you're looking for. Keep working with your docs.

Good luck and take good care.

 

[lgelb]

As we have said and BestFriends recapped, bodywide twitching whatever your reflexes, without any mobility impairment, however longstanding, doesn't add up to ALS. That is the opinion. I expect a reassuring EMG, but I think we've been as reassuring as we can be, for now.

Stop back by when you have the EMG results, since that helps others. I'm pausing your posting privileges till mid April to help you focus on other parts of your life. When you are anxious, as Nikki said, do things that make you happy. Most PALS here cannot do all those things, but you can.

 

[Bella04]

Hi all,
I am stopping back by to update as suggested. All MRI’s and EMG last week was clear. For that I am thankful, but also still very confused due to my ongoing symptoms. (Thanks in advance for reading).

Neurologist said no fasiculations were found. It has been 3 months since twitching onset, and I continue to have them 24/7 in both feet, daily random throughout rest of body, and recently in tongue ( at rest, one spot near center). My husband has witnessed these twitches in me also. Recently my low back, buttocks, and leg stiffness and pain has become frequent.

When I told my neurologist of tongue twitches before the Emg, he said that’s not usually common with benign fasiculations. For Emg he tested my tongue (opposite side of twitches), both legs and feet, paraspinals, right arm and hand. After Emg, he brushed off my concern of the tongue twitching, and said he still thinks I have benign fasiculations. He did not do another clinical exam at the visit, but did a strength test and said no clinical weakness.

I don’t understand how the Emg did not pick up any fasiculations, especially in my feet. They’re ongoing daily and nightly. Like others, my worry is that it’s too early in for the Emg to detect any issues. I asked the neuro. if the Emg reading could change in the future and he said yes, like if I were to develop weakness and get retested… that anything is possible.

He has been practicing over 15 years and claims to have experience with ALS, though he is not a neuromuscular specialist. He did not recommend any more testing at this time, though offered to refer me to a research hospital if I want another opinion.

I still feel stuck in limbo due to my continuing twitching- it’s a Lot, and never stops in feet. I welcome and respect your opinions/advice around all this. Again, thank you for reading any responding (if you choose to). God bless.

 

[lgelb]

Your perception of fascics and those seen on EMG are not the same thing. Thus, there is no reason for confusion.

It was appropriate to test the opposite side of your tongue from the twitches, and no motor neuron damage says no ALS. The hallmark of ALS is certain findings in areas that are not a problem.

It is standard to acknowledge that an EMG could change. So can any other test. It means nothing.

Instead of feeling stuck because you don't have a deadly diagnosis, I'd feel unstuck and ready to tinker with sleep, stress, diet, hydration, stretching, exercise...all the thing that can make a difference in twitches. I'd be dancing in the street. I wouldn't be here at all.

If the stiffness localizes, you could ask your PCP about a PT evaluation.

If the feet remain the primary twitching spot, you could ask about screening for RLS and related disorders.

The great thing is, the most likely culprits for all this are a lot less serious than ALS.

Closing this thread so you can start dancing. Please do not start another unless you receive a neuromuscular diagnosis. All the best.