Did your symptoms begin this way? Can you relate to any of this?

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chrissylynn

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Hi, Everyone--

First, I am truly, incredibly empathetic about what you're all experiencing, and I'm sending you all great amounts of love. I'm praying for a cure for all those who have this devastating disease.

I read the "read this first" section. As a person who is desperately searching for answers and is suffering and worried, pleeeease go easy on me. I have seen doctors--quite a few. I don't have a diagnosis yet, so I am interested in hearing how those with ALS experienced their initial symptoms or "prodrome" period to see whether they might "match up" with my own as I await my EMG, which is scheduled for next week. I am losing a lot of sleep over what's happening, both due to the constant activity in my muscles and the stress of not knowing where this is leading as I feel more debilitated over time.

I'm a 46-year-old, 112-pound woman in perimenopause. I eat well and exercise. Since sometime in June 2022, I've began experiencing severe fasciculations in my feet that are visible to the eye and that jerk my big toes back and forth. For probably a decade prior this--whether it's related or not--I experienced nightly cramping and contortions in my feet (always at night), which were painful. These cramps are less common now and almost seem to have been replaced by the fasciculations as a new form of hyperactivity or malfunction, although I often feel like I'm just a "hair" away from a cramp, so I have to move carefully to avoid getting them. I've read online that in some people, ALS can have a prodrome period of cramping that precedes fasciculations and weakness, so I'm concerned.

How did this all start? A few months ago, I noticed weird movements in my feet that have since become visible, and the feeling has traveled up my calves. I don't see visible fascics in my calves, but I feel them constantly moving, mostly at night and in the early morning. My right hand has been twitching as well, and I have paresthesia that comes and goes in patches on my right calf, right foot, and right forearm. After I contract my forearm muscles, sometimes I notice what feels like a slow elastic band that maintains the (painless) cramp for a moment afterward. I also have tightness in my legs that makes walking feel a little challenging, as if I'm struggling against resistance bands. I have "perceived" weakness in my right forearm, but my neurological exam for strength and reflexes in all four limbs was normal. Did any of you experience fasciculations before the onset of weakness? I also get some occasional random twitches in my face, quads, and other areas--and even my anus. After weightlifting, I notice a longer recovery time and more soreness than usual. Plus, no amount of stretching seems to help relieve the muscle tightness.

In case it's worth noting, when I got my 2nd dose of the Pfizer Covid-19 vaccine over a year ago, my right leg seized a few hours later, and I had stiffness that lasted 2-3 weeks. I wonder if the relationship is causal. I also felt some pinprick sensations in my right hand and occasional shooting nerve pains in the right arm (my shot was in the left arm) for 48 hours after the shot.

Back to this year. A couple of months before the fasciculations started (early March through mid-April 2022), I experienced dizziness, brain fog, blurred vision, and a mild headache that felt like cranial pressure. This lasted a couple of months and obviously concerned me, so I began eating a strict diet with tons of fruits and vegetables, and I tried four 24-hour fasts at various times over a 2.5-month period, thinking that fasting would start an autophagic, healing process. As an unintended secondary effect, I lost 11 pounds. Meanwhile, I started ingesting LOTs of lion's mane because I'd read that it can remyelinate nerves (in case my myelin had been damaged). Around this point, the fasciculations started, so I'm wondering if I caused them by fasting or by taking lion's mane, or whether the fasciculations, cramps, and stiffness, are related to the initial symptoms of dizziness, etc.--or anxiety and lack of sleep. I just don't know. The problem, though, is that in addition to all of the twitching, my muscles are tight and stiff.

Every day since all of this began, I've been getting brief, stabbing pains in my face and head. They last a couple of seconds and recur all day long.

In April, I had a brain MRI that showed four small white-matter hyperintensities in my frontal and periventricular lobes. I don't know if this is typical aging or if it's related to my neuromuscular issues. I turned down the spinal tap (out of fear), opting instead for a diagnosis based on symptoms and progression.

My neurologist does not believe that I have MS, and I've also tested negative for a variety of lyme diseases, sjogren's, lupus, and celiac, and my electrolyte levels are normal. Two ENTs said that there is nothing wrong with my ears, although since seeing them, I've noticed occasional, bad tinnitus.

I'm not looking for you to diagnose me--I just want to know if any of you has experienced any part of what I've been experiencing. I'm wondering if I have two entirely separate issues occurring: whether I began with some weird neurological issues and then triggered a gene or something that caused the muscular problems (as "Issue 2"), or whether the two groups of symptoms are related.

I also have HSV1, the "cold sore" herpes virus. It began about ten 12 years ago by manifesting as sores on my bottom lip, and after a few years of this in my adult life, I noticed that it began traveling along the nerves in my jaw each time it "retreated" because I felt this as nerve pain. Then, eventually, outbreaks became associated with nerve pain all over my face, as trigeminal neuralgia--little stabbing pains in my forehead, jawline, temples, etc. Eventually, I started getting bouts of this neuralgia WITHOUT outbreaks, and this nerve pain has been coinciding with all of my other symptoms over the past five months, making me wonder if herpes is behind all of this. My infectious disease doctor said that herpes can have all of these effects when it enters the nervous system, so I'm on day three of a month of antivirals to see if I improve. So far, I'm not seeing a difference, but it might be too early to know.

While I don't know whether I have ALS yet, I've read that viruses, like endoviruses and herpes, have been found to have a possible causal association with ALS. Take a look at the literature. I'm happy to report back in a few weeks to tell you if the antiviral worked, and if it did, maybe you can get tested for various herpes viruses, many of which don't show up as sores but simply attack your nervous system. Herpes 6, 7, and 8 are examples.

I am VERY scared about all of this, and I feel as if my body is degenerating. I have never felt this kind of muscular degeneration in my life. Please let me know how your issues began and if you can relate to any of this. I am desperate and trying all angles in my research. Thank you, and bless you all.

Christine
 

Bestfriends14

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Hi Christine,

You certainly have a lot going on and that must be very frustrating. For my husband's onset of ALS, he did not have a single one of your issues. His first indication was failure to stand on his toes or go back on his heel on his left foot. Fascination presented much later in his progression. I've not heard of other PALS with your type of presentation, either.

However, I have heard of all sorts of strange side effects from the covid jab; much of which you describe as your symptoms. Regarding herpes, if it was causal for ALS, they would have discovered that correlation ages ago and a treatment for the disease would exist. Sadly, this is not true.

I'll let others chime as to their experiences with ALS onset.

I hope you find an answer to what is going on soon.
 

KimT

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Christine, That's a lot of stuff going on at once.

The first symptom I noticed was fasciculations and cramps in the arch of my left foot. They systematically went up to my left calf and, within about three months, jumped to my right calf. They stayed there and I ignored them. I was a runner and had hit a crack in the sidewalk about a year prior, took a face plant, and ended up with a TBI. My legs weren't weak, I just tripped. The crack was nearly five inches high and covered in grass. Another older lady fell walking in the same place.

After the TBI I felt like my mind wasn't working right. I was a CPA and college professor so I needed to be sharp to do my job. My local neurologist referred me to a neuro psychologist who did a full day testing. I had several abnormalities with motor reaction time but none to worry about and minor.

Fast forward a year and that's when the twitches and cramps started. I suspected nothing since I could still walk 5-10 miles a day. I took up speed walking instead of running and did it in safer places.

On a routine follow up with my local neuro and pain management specialist, he noticed I had brisk reflexes on my left leg. He also saw the fasciculations. I also had a positive Babinsky on left foot. He referred me to Mayo. I delayed because I really thought nothing much was going on. I finally went since my primary care, at that time, was at Mayo. My first EMG was classic ALS but I was still strong on the clinical exam, except for left wrist, if I'm remembering it correctly. They also saw brisk relfexes and positive Babinsky. Nine months later I was diagnosed.

All that said, I would pursue the matter with your infectious disease doctor. I have heard of other people with symptoms from both Covid and the vaccine. These usually go away except in the case of long Covid, which my nephew has.

Regarding fasciculations. They can be brought on by too many things to list, so I won't list them.

Two suggestions: avoid Google and follow up with your doctors.
 

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I'd suggest reading this really carefully too as it helps us not have to repeat the basics of how ALS happens.
You have a lot going on, but you need to work with doctors and remember that twitching and cramps really mean nothing.
The hallmark of ALS is failure to be able to do things while feeling completely normal.
You really have described something very different, but again, your doctor is the only place to work this through.

All the best, I truly hope you get answers sooner than later.
 

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Fasting and megadosing Lion's Mane certainly aren't the same as antivirals, and can have serious consequences as a shot in the dark. I would complete the month before setting a new course, and refrain in the future from self-treating for potentially serious issues such as blurred vision.

You say you aren't here for a diagnosis, but there is no real point in asking about similar experiences. Your symptoms are diffuse, they're not necessarily related, you have pre-existing conditions, and you're in the middle of treatment. I see no resemblance to ALS here. As to any ALS relationship with herpes viruses, in fact no "causality" has been established, only limited comorbidity. It is an active research area.

Let us know what the EMG shows. I would expect it to be reassuring as regards MND. As to possible causation relative to Covid vaxx and/or "gene triggering," I would suggest that looking at the road ahead centers on treating what is, in fact, treatable. That may not include every feeling that you perceive, and, of course, it can't include rewriting the past.

Best,
Laurie
 

chrissylynn

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Bestfriends14, thank you for your kind reply, I’m so sorry about your husband’s diagnosis.

Christine
 

chrissylynn

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KimT,

I’m so sorry about your diagnosis.

What scares me is this part of your post: “The first symptom I noticed was fasciculations and cramps in the arch of my left foot. They systematically went up to my left calf and, within about three months, jumped to my right calf.”

This is the same course that I’m observing.

To everyone else,

Thank you for your replies. I’ll let you know what the EMG reveals.

ALS is a cruel and devastating illness, and it’s not fair for anyone to have it.

Christine
 

KimT

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Just to clarify: my first EMG was indicative of ALS and was rated "possible." It took another nine months to get a clear diagnosis from Mayo Clinic and Johns Hopkins.

Benign fasciculations and even cramp fasciculation syndrome is much more likely than ALS.

I wish you the best.
 

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I hope you did return and clearly read that you are not observing the same course as KimT at all.
Let us know the EMG results, and please believe them.
 

chrissylynn

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Hi Everyone,

The EMG results showed benign fasciculations and no nerve damage. I appreciate all of your replies, and I will keep everyone in my prayers.

Christine
 
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