Suspicious symptoms after COVID vaccine - officially ALS diagnosed 2 years later

[powerpadman]

My brother, just 37-years-old, was recently diagnosed with familial ALS. We have one aunt that passed from ALS 15 years ago, but that was thought to be sporadic and ALS wasn't even on our radar.

As many with this horrible disease try to do, we are racking our brains to potentially understand what triggered his ALS. We also understand that the triggering may have been multi-factorial.

Also of note, his initial DNA panel from Invitae came back negative. I think 34 genes were tested.

Here's a timeline of his Covid vaccine, booster, and subsequent symptoms:

• Pfizer vaccine in early 2021 with booster in late 2021
• Covid at end of 2021
• Beginning of 2022, had rash over whole body, hands puffed up like a balloon, and behind ear was a swollen node ball
• Throughout 2022, experienced continual fatigue and body aches, began taking magnesium supplement to potentially address these symptoms
• In mid 2023 had foot drop, cramps, achy foot and calf
• Later in mid 2023, got so sick that movement was even difficult
• Later in mid 2023, had rash again on head, hands, and arms
• Late 2023, foot drop got worse, lots of twitching and tremors, major weakness in left leg, and Hyperreflexia/Babinski
• End of 2023, EMG shows upper/lower abnormalities suggestive of motor neuron disease - diagnosis of familial ALS

In reading several Reddit posts here as well as the other ALS online forums, some point to no evidence the vaccine or Covid could trigger ALS. Another argument is that we haven't seen an influx of ALS diagnoses since the vaccine and Covid.

However, isn't it possible the vaccine and/or Covid could have triggered, or played a part in triggering ALS in some people who carried a rare ALS gene? As my brother's gene didn't appear on the Invitae panel, he doesn't carry a more common gene, so the assumption is that he has a rarer or even undiscovered ALS mutated gene.

Wondering if others have also experienced a similar story?

 

[lgelb]

Color me confused. How are you getting to a "diagnosis" of familial ALS from one aunt (very sorry) and a negative genetic panel? Where are you getting the assumption that your brother has a rare or unknown gene?

Also not understanding how/why you are implicating either Covid or a vaccine. Again, ALS is a process that takes years to develop. But even if those connections stood up, we can't go back.

Does your brother have a definitive dx or not? "Suggestive of" is not "diagnosed with." You report enrollment in trials but your continued use of these terms raises doubts.

Nothing you are asking is knowable for your brother or anyone else. However, helping your brother live and die as well as possible with ALS is a knowable, doable proposition.

Therefore, I will suggest that you, he, and whatever other family you share decide if chasing shadows (the unknowable and not actionable) is how you all want to spend any of your remaining time together.

 

[rmt]

Sorry your brother is going through this. Where was he diagnosed? I'm confused how he was diagnosed with familial ALS if he didn't have any of the genetic markers. An aunt with ALS isn't enough for your brother to have inherited any gene. Are your parents alive? I'm assuming they do not have ALS. Your brother could not inherit ALS from an aunt, only from his parents.

There has been no scientific evidence that the covid vaccine causes ALS. And given how many people have had the vaccine in the last 3 years, one would think that if there was a causative effect, we would be seeing higher numbers of ALS diagnoses (we are not).

 

[Nikki J]

One second degree relative is technically defined as possible FALS. With a negative panel it is true that there are still rare undiscovered genes. I hope he can get someone who is studying genetics to take a sample for study. He might reach out to Bryan Traynor at NIH or Matt Harms at Columbia. In the past they were studying this. Maybe they still are.

Coincidences happen though. One of my cousins had a cousin on his other side with ALS If we didn’t know my cousin’s C9 came from his mother this paternal cousin of his might have suspected FALS. And there are even cases of conjugal ALS in unrelated spouses

Professor Al Chalabi , a leading British ALS specialist with an interest in genetics, said that when they surveyed clinicians about what they defined as FALS there were answers that counted second cousins and others that didn’t count siblings or parents. Physicians often don’t follow the official definitions

As I have said before not only are clinics not seeing a dramatic uptick neither are the carrier studies whose participants do have documented FALS mutations

It is normal to look for reasons. Btw I hope your brother has had two neuromuscular opinions

 

[KimT]

I'm so sorry your brother and your family are going through all this. I had three opinions for a diagnosis.

Some of the other symptoms might be from long Covid. Rashes, fatigue, body aches, and many other issues result from getting Covid. My young cousin has long Covid and he is no longer able to run.

There have been long discussions on what triggers ALS. I believe it is multi-factorial. I have had several bad head injuries, one was a TBI. I also lived on a golf course for 30 years and it was sprayed with Roundup. Still, I don't know. There was a husband and wife in my home town who both died from ALS. Diagnosed 10 years apart. The area I grew up in is a cluster area. After awhile I just stopped trying to figure it out.

I hope your brother gets at least two opinions from neuromuscular specialists. Then, he and his loved ones can make a plan for the future.

 

[powerpadman]

Thank you everybody for the thorough and great answers. There were some good questions asked so I will try to answer them as well as I can.

@lgelb and @KimT, my brother has been diagnosed with ALS by two separate neurologists with all mimics ruled out. @lgelb because my brother had a EMG which strongly pointed to ALS, plus loads of symptoms, plus an aunt who passed from ALS, the diagnosis is ALS with a strong suspicion of familial ALS. Both neurologists told us that the probability of both my brother and aunt having sporadic ALS would be much lower than familial ALS of a rare or unknown gene. In figure 1 of the linked article, I suspect my brother and aunt carry a mutated gene in the "other" or "unknown" sections of the familial ALS breakdown on the left.

@lgelb I am not implicating the vaccine and/or Covid in triggering my brother's ALS. But I am wondering if it may have played a part. I think that it's acceptable and reasonable to walk and chew gum at the same time. Our family is moving ahead in planning to help my brother deal with this disease, but we're also curious to what could have triggered. At some point, whether in 5 years or 50, we will know much more about ALS and its likely multifactorial triggering. And this discovery should better help us find a cure that will also potentially be multifactorial.

@lgelb I am curious about your comment that ALS is a process that takes years to develop. Can you explain that in further detail, because I read this post on ALS Forums which says "there is no 'incubation time' or 'window frame' once ALS twitches have started. If it's ALS and you are twitching, the disease is ALREADY well into running it's course, and of course, will ALWAYS show up on an EMG."

@rmt my parents are both alive, and it was my mother's sister who passed from ALS 15 years ago. We had no other known family history of ALS, but given that information, my brother's neurologists strongly feel it's familial. Although the initial Invitae panel of 34 genes didn't yield a match, his ALS team has connected with an ALS research team who will do a full mapping of his genome and compare that to both of our parents.

@rmt I'm aware there isn't currently evidence that Covid and/or the vaccine can cause or trigger ALS, but it's certainly possible. I'm not suggesting either one has caused or will cause ALS in a large number of people. But I wonder if it could trigger ALS in a small subset of ALS mutated gene carriers. After all, many of the ALS experts believe that ALS is not necessarily one disease, but rather several different diseases that all resemble the same disease.

@Nikki J thank you for the info on Columbia. That's the research group my brother was initially going to get additional ALS associated gene mapping from, but his neurologist instead wanted to do a full genome mapping and his results are being sent elsewhere (maybe Harvard?).

@KimT thank you for your thoughts! Yes, my brother has gotten opinions from three separate neurologists and went forward with two which have independently given him ALS diagnoses. He will likely settle on one as he progresses.

 

[Nikki J]

If the sequencing is not revealing he should pursue the researcher angle. Donation of dna samples is how all the current mutations were found including the rare ones.

To answer the years before we know from carrier research there are biochemical changes in several areas in asymptomatic carriers. In c9 at least there are also mri changes very early. They don’t know how early. There is a study of at risk children looking at that ( children of c9 carriers no one will test a minor and reveal the results. ) The study is of course blinded so no one who has any family contact knows.

Also there was interesting sals research in the UK. They were able to access stored blood and found SALS patients had higher nfl 2-3 years before first symptom.

So this has nothing to do with symptoms and is all about physical findings in blood, csf and on mri.

There is a lot of discussion in the FALS community about earlier access to trials and treatment based on biomarkers. The ATLAS trial for sod1 is the very first step in this.

 

[lgelb]

Of course, once there are symptoms, and you have motor neuron disease (with multiple variants, as you mentioned), you have it. Nowhere here have you read otherwise.

Apart from trauma, it is pretty obvious that "triggers" for most medical conditions are "multifactorial," from cancer to a headache. ALS is not special in that regard.

If we focused on trying to predict all these conditions, we wouldn't have made the treatment headway we have. There's only so much time and money in the world.

Past a fuller genetic analysis, the quality and quantity of your brother's life goes with "what now." I won't belabor this since the progress of his disease will unfortunately reveal that truth to you.

However, it is really not conducive to anyone's health here, to throw unwarranted shade on Covid vaccines that have saved millions of lives and prevented the corresponding amount of disability.

Increasingly linearly with each infection, the incidence of lasting illness, which is currently keeping millions out of the workforce and many in bed, does not even count organ/blood vessel infections that cause/accelerate heart attacks, stroke, dementia, amputations, diabetes, arrythmias, kidney failure, cancer, etc. In short, the virus accelerates all the chronic conditions of aging that we have studied so far.

Ongoing safety research remains strongly in favor of taking all the vaccines offered on the recommended timetable (not just Covid). And then there is the incremental risk of getting Covid or any virus, as a PALS or as a CALS that could infect a PALS.

Then there is the psychological distress that your brother will accrue if he really believes that an intentional action on his part caused his ALS.

Our prime directive is to support health and wellbeing. Therefore, I will delete any further anti-vax speculation on your part since you have had your say on that score.

 

[Lhberko29]

Despite what think people I believe Mine came after 3 rounds of having Covid and I was vaccinated with Pfizer. I gave up on taking the vaccine it’s didn’t help me. I did the gene studies it’s not family genes. I agree with people that believe it came from Covid. I was competitive singer now I have bulbar-onset ALS it robbed me of my voice & swallowing. Very devastating to life and I’m on feeding tube. No one talks about coping with this diseases. Especially if you newly diagnosed. Family doesn’t want to eat front you. No more being normal. Everyone wants come see me for last time. ALS clinics are very overwhelming. I live life for moments & feel like I’m on borrowed time!!

 

[Nikki J]

I am sorry for your diagnosis. Correlation is not causation. Two days before my first symptom someone said to me “ you should see the new als clinic. It’s great”. In spite of my accusing him of jinxing me it obviously wasn’t the trigger. It was unfortunately my time. I do think post covid inflammation could make things worse though

 

[KimT]

Lhberko29, Pfizer may have saved your life. The vaccine doesn't completely protect anyone from Covid, but it does make infections less problematic. I'm so sorry you contracted it three times. That must have been horrible. My grand nephew, a school teacher in Buffalo, got it twice before they closed the schools. He said it was brutal.

As Nikki says, correlation is not causation. As far as triggers, we will never know so we have to do the best we can in our situation.

I agree that ALS clinics can be overwhelming. I have two co-morbidities so I get to see my neuro at Mayo separate from clinic visits.

It's a terrible disease.