MND and vaccines

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lssholes

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This is the first time writing on the forum. Just recently diagnosed. Curious if any member or caregiver ever noticed signs of ALS after receiving a vaccine.
 

Nikki J

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Since many people get vaccines a certain number of ALS patients are going to start symptoms after a vaccine. That isn’t causation. There is an association ( fairly rare) with vaccines and GBS and some of those people go on to have CIDP which can be somewhat of an ALS mimic.

it is really really common to look for a reason this happened. People ask about medications, injuries surgeries and other things.

which MND do you have ? I hope you had a second opinion and diagnosis from a neuromuscular specialist
 

lssholes

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ALS diagnosis all started 8weeks after the new Shingrix vaccine. This vaccine used an adjuvant never used in US vaccine before and antigen derived from genetically engineered Chinese hamster ovary cells.
 

KarenNWendyn

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Sorry to hear about your diagnosis.

You were diagnosed 8 weeks after the vaccine? Or first symptoms started 8 weeks after? Even if someone has rapid progression, 8 weeks after a vaccine seems awfully fast to attribute cause and effect when it comes to MND. Consider that it takes losing about 70% of innervation to a muscle to develop clinical weakness in that muscle. That process takes time. And then to properly diagnose ALS, denervation changes need to be detected in multiple muscle regions along with upper motor neuron signs and ruling out ALS mimics. The time course doesn’t seem right to me. Even if it was first symptoms, that seems fast.

As Nikki says, it’s common to search for a reason when something is not right. However, this doesn’t prove cause and effect.
 

lssholes

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Symptoms started 8 weeks after with slurred speech by January losing dexterity in right arm by February swallowing difficulty and then muscle twitching by June 2 MRIs 2 EMGs and now full bulbar ALS walked 5 miles 1 week before vaccination and as a healthcare professional worked 8 to 12 hours daily. Have lost a total of 24 pounds started after the vaccination. Mayo Clinic said could not say vaccine didn’t stimulate something they just didn’t know
 

KimT

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Wow. Anything's possible because, IMO, there are many triggers to this disease. Mine happened to be a TBI but I also grew up in a cluster area.
 

Nikki J

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not the same thing but I have had 2 doses of shingrix ( with horrible but transient side effects) and absolutely no acceleration of symptoms. I don’t think I even progressed in the 4 month period between first dose and eight weeks after the second dose. Of course the doctors won’t say never but if you had shingrix in the US you are most likely over 50 which is getting to the age that is considered a likely onset age if you are going to get ALS.

the phase 3 trial had 38,000 total subjdctsfollowed for four years before approval 2 years ago so a lot of people have had it - 1/2 those people, the earlier phase trials plus post marketing experience. I am sorry you have ALS and understand asking why
 
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lgelb

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Tennessee, I am very sorry to hear about your diagnosis while glad you found us. However, as a pharmacist, I'm sure you're aware that genetically modifying viruses is a common way of producing vaccines as well as many other lifesaving applications, and that adjuvants derived from the soapbark tree, e.g. as is the one in Shingrix, are among the most common, while being continuously improved. As you no doubt also know, there are no case reports or trials to substantiate a connection.

Shingrix has been demonstrated to be a vast improvement on Zostavax's safety and efficacy as a vaccination against shingles, and shingles (which my siblings have both had) is an extremely painful and disabling illness. I would feel very badly if someone were to increase their risk based on any fear of ALS.

Best,
Laurie
 

lssholes

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No, I am sorry Laurie redo your research ASO1b has never been used in a US vaccine when used in malaria vaccine increased meningitis in children. I have patients who lost mobility on the same side as vaccine developed Lupus at the age of 67yrs old and lost 30 pounds after getting vaccine. I am by far not an anti vaccine individual but why accelerate through a vaccine by genetically engineering just to produce a vaccine faster 3 patients developed ALS during studies 6 died of cardiovascular problems and if you haven’t read you need to because 35 percent had v tach which is not even listed in the adverse effects to this day. Also, how bout the 2 young girls who died from Gardasil (ALS). Please look further.
 

KarenNWendyn

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Issholes, I am truly sorry for your diagnosis and understand why you would question a reaction to the vaccine given the time course of symptom onset.

I honestly don’t feel there is enough research to prove causality. As Laurie and Nikki point out, there are established cases of vaccine- induced illness such as GBS. And there are certainly many examples of autoimmune illnesses triggered by medications. However there Is much less evidence to implicate vaccines as causative for ALS and other degenerative neurologic conditions.

While we do welcome friendly debate and discussion on this forum, I’m concerned that your points are taking more of an argumentative tone and might discourage PALS from getting vaccines that could be of benefit. I don’t want to see this escalate into an anti vaccine rant.

I wish you well but will be closing this thread.

In case you’re wondering, my professional background is as a rheumatologist/ internist.
 
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