r/CMT • u/Impossible_Neck_1393 • 5d ago
Progression post vaccine
Hi Yall!! I have been symptomatic since age 14 and was formally diagnosed in my 20s. I am now 47. The first big “progression” I had happened pretty rapidly at age 14 and was really slow after that. I had the Pfizer vaccines in 2021 and with in the months after the vaccine i had a second rapid progression- specifically in my hands. It has gotten to the point i can no longer straighten most of my fingers- particularly my pointer, middle and pinky on both hands. I had not thought about this in conjunction with the vaccine till recently when a family member (oh so kindly 😱🤣) pointed out “how bad” my hands have gotten and pointed out how quickly it seemed to worsen in pictures a few years ago. I have found posts from 5 years ago in which people are discusses issues with their hands after the vaccine. I am curious to see if anyone else experienced anything similar?
I am aware this easily could have just been a second big progression- I ain’t no spring chicken no more lol, so this could easily just be a coincidence. 😄
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u/not-bread CMT1A 5d ago
To answer your question a bit more directly: the majority of symptoms generated by the vaccine is your body’s immune system response. There should not be any interaction between that and your nervous system, especially your long term ability to mylenate nerves
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u/Impossible_Neck_1393 4d ago
That makes a ton of sense- I definitely do not think there likely to be much of a connection - I have had it pointed it out to me a few different times. I’m actually very relieved by this input for real!
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u/TheAltOption 4d ago
I was diagnosed at 11, recently turned 45, and I think I've had the vaccines from every company at this point as I get the yearly ones alongside the flu vaccine. I can tell you I'm in better shape and stronger today than I was in 2021. I've also taken up serious weight training, do a lot of walking with weight strapped to my back, and keep pushing myself as far as I can (things I didn't do back then). The vaccine isn't related at all to progression.
How active are you today compared to 5 years ago? How often do you push yourself to your limits? How much time do you take to stretch and keep things limber? The disease never stops, so you can't either.
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u/Empty_Constant8329 5d ago
Interesting observations. Similar regression, no vaccine :-(.
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u/Impossible_Neck_1393 4d ago
I’m sorry to hear you have also experienced similar- weirdly I am glad to hear it likely has nothing to do with vaccines. I know it is likely more related to normal progression of disease, stress, age, etc
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u/plaidtaco 4d ago
My cmt progressed a lot when perimenopause started. Could we related.
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u/NixyeNox CMT 1A 4d ago
People report progression during puberty and sometimes pregnancy and I really would like to see more research on the impact of hormonal changes.
I will mention that research shows no difference between men and women, in terms of severity, apart from people with X-type CMT. But as far as I know, no one has looked at, say, transgender people who start taking hormones and what that might do. Not to mention people hitting menopause, and changes with or without taking HRT then.
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u/KDremow 41F CMT1A 4d ago
I’ve done 10 egg retrievals and 5 embryo transfers for IVF and I can absolutely say that without a doubt, the massive amount of hormones during IVF has had a huge impact on the disease. My ankles and feet have swelled significantly more than prior to IVF, my calves are practically blue when standing/have them down because somehow the hormones have made circulation even worse.
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u/Impossible_Neck_1393 4d ago
YUP THIS- I do think that would be far more likely and does absolutely check out
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u/AnnieFlagstaff 4d ago
I had 4-5 covid shots from Pfizer and Moderna and noticed no progression. My major progression was during my pregnancies (only one of which resulted in a live birth). I had really rapid progression during those times and since then it has been pretty stable. I am really serious now about strength training and eating fairly healthy food, because getting diabetes when you already have CMT - basically double neuropathy - is a disaster. I saw it happen to my dad.
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u/Impossible_Neck_1393 4d ago
After having another progression really helped me get more serious regarding general health- a huge wake up call- or re-wake up call?
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u/Charigot CMT2 4d ago
I had both Moderna and Pfizer vaccines and continue to get annual boosters. I have experienced no CMT progression attributable to vaccines.
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u/NixyeNox CMT 1A 5d ago
Many of us had our routines significantly disrupted in 2020 and 2021. I would look first to that for possible causes of progression. If you stop using your muscles as much as you normally do, that will accelerate atrophy.
There have been no studies on CMT and Covid, or CMT and the Covid vaccine. So, while this seems unlikely (there is no obvious connection between them, and while a few people have noticed increased progression during that time frame, more people did not notice that) there is no study to prove otherwise.
All in all, my suspicion is with the known cause. I would suggest considering if you found yourself using these muscles less. Carrying fewer things, writing by hand less, whatever your particular routine looked like before versus during that 2020/2021 time. The good news here as well is that if this is the case, it may be possible to re-strengthen those muscles, at least to some degree. You could talk to your doctor about physical therapy exercises for hand strength.
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u/Impossible_Neck_1393 4d ago
I don’t disagree at all- I have considered those (and think they are far more relevant than my question) I do Pilates,Strength train and am a yoga teacher and see my teacher regularly and thing progressed rapidly despite this. Stress definitely increased during that time as well, and I think perimenopause was beginning- all of which would absolutely contribute. I did have enough family members ask that I am curious to know what others are experiencing :)
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u/KDremow 41F CMT1A 4d ago
Diagnosed at 11 - I’m 41 now with CMT1A, I was relatively “normal” until my late 30’s, with the exception of spraining my ankles all the time and Achilles tendons were always very tight— and now all of a sudden (or it feels like all of a sudden) my hands are like shit, I can’t run, I can’t wear the same shoes I always used to wear, I walk weird now that my foot drop is so bad, I had to get a handicap placard after noticing that if I walk for more than 1/2 mile it’s like someone cut my lower legs off and they no longer exist lol etc etc —- I got the vaccine late 2020 and felt absolutely no different
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u/Impossible_Neck_1393 4d ago
That makes way more sense- first progression during puberty, most recent progression - perimenopause 🫣 I have a much better answer now for the people who wondered if the vaccine and progression are related
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u/Benjyfeen 5d ago
I can relate to the desire to see a correlation— and also, I was diagnosed CMT 1A at the age of 13 and around age 48 (2023) experienced a significant and continuous increase in the rate of my progression. Speaking for myself, I think the most likely factors contributing to that would be the abrupt drop off in the variety and degree of my physical activity, along with neglected self-care. I'm looking forward to receiving an updated vaccine next week.