Concerns with Covid Vaccination

[AmyMaccarrone]

Hello all -
I was hoping to get some thoughts on this topic. My grandfather and mother both passed from ALS around age 65. I have not had genetic testing done, so I don't know if I have a mutation, but I figure it's 50/50. My concern is doing anything (like a covid vaccination) that will trigger the onset of the disease. My mothers symtoms came on soon after a shingles shot and progressed alarmingly quickly. She passed about 5 months after. This makes me nervous to get the vaccination. Does anyone else feel this way? Thank you for any input!

 

[Nikki J]

Sorry about your family.

i do not believe for one minute that vaccines directly trigger ALS. Your mother was of an age where FALS manifestation ( and SALS for that matter) is common

I have c9 FALS and I have had shingrix and now one dose so far of moderna with no ill effects.

consider the risks of covid especially long term covid. That is KNOWN to cause lung damage and neurologic sequelae including long term weakness. Suppose that happened to you? Suppose further that you eventually did get ALS. Would you want to go into it already severely compromised by covid?

you didn’t ask but I am going to encourage you to consider participating in research for potential carriers There is a study at Mass General called DIALS. They will test you for all known mutations and you can choose to learn your status or not. Cures/ prevention methods are coming. They need carriers to help bring them to the finish line

 

[AmyMaccarrone]

Thank you for that information, I just emailed Mass General.

 

[Nikki J]

Awesome. Thank you

 

[GXTrex]

@AmyMaccarrone

Make sure you confirm weather or not you have to know your own status. I dont know anything about the Mass Generals study, but I spoke to Columbia about their ALS Families Project. Previously you did not need to know the results in order to participate but now you do. They save research funds not following people who test negative. Of course if you want to know regardless this would not effect you.

 

[Nikki J]

within the last month mgh still was doing nondisclosure and accepting those with clear FALS history but no known mutation. This is different than Columbia which has always required a known mutation as does Miami

 

[GXTrex]

@Nikki J
I see thanks for the update. Someone had told me that previously Columbia didnt always require you to know your status.

 

[Nikki J]

True you said that but I was saying DIALS doesn’t require an identified family mutation (which columbia and Miami always have), as long as there is a family history of FALS. DIALS started with just c9 and sod1 families but expanded to all mutations plus the pattern of FALS. I think dials is about a third each of gene positive gene negative and nondisclosure. There is a related study only for known gene carriers and I believe the optional skin biopsy is only for carriers

 

[AniSk]

I’m participating in the Family Project with Columbia. In fact, I just went for my follow up today, after my initial visit 2 years ago. The c9 gene was confirmed with my father but both myself and my brother did join the study without finding out our status. Yesterday, I had a preliminary zoom session with the genetic counselor and asked if this option is no longer available and she told me that was incorrect. She did say that known carriers may be given priority for visits but that they are still enrolling those who wish not to find out their status. If anyone has any questions about the experience, feel free to ask!

 

[GXTrex]

@AniSk

What are the zoom sessions like with the counselor? Do you have to go in periodically even though you do not know your status? I was told by Dr. Harms that you need to know your status to participate.

 

[Nikki J]

GXTrex I would suggest contacting Ms Harrington in the link and asking if there are / are not opportunities for you

ClinicalTrials.gov

www.clinicaltrials.gov

 

[GXTrex]

Thank you for the link Nikki. I will move forward with this in a few months after I get married. I am pretty sure my brother will do the same.

 

[AniSk]

@GXTrex I am supposed to go in once per year, although I believe in the description of the research it says it could be 6 months to a year and half. The meeting with the genetic counselor is part of each visit. This year, it was a zoom visit the day before and basically just an update of my family history and also an opportunity for me to ask some questions. Ellie Harrington is the genetic counselor (as Nikki posted) and she was the one who said there was still the option to enroll without finding out your status- just that known carriers might be given priority. There are two sub-studies. If you might want to find out your status, you can first enroll in Sub Study 1 where they will offer a genetic counseling session to discuss the decision and then send you the testing kit. She said that, even if you begin to participate in SS1, you don’t have to decide whether to get tested or not until after the session. If you do get tested, and are negative, your participation would end there. If you are positive, you would move to Sub Study 2 and proceed. The other option is just enrolling in SS 2 without knowing your status (as long as you have a direct relative with the gene).

I’d definitely encourage you to look into this further. The process is stressful and definitely makes me think about all the unknowns in this situation- sometimes with hope, sometimes not. But it’s a great way to keep on top of the research and feel like I am doing my part to contribute.

Congrats on your upcoming wedding!

 

[Nikki J]

Circling back this illustrates a case of neurologic complications of covid Case Report: Imaging Findings in COVID-19 Muscle Denervation Atrophy

 

[GXTrex]

@AniSk
Thanks! What is the difference between ss1 and ss2? Do you go in and get a full workup yearly?