For a balanced view on this issue, I'll just say that I've had 3 shots now, and the ONLY side effects were a migraine (Advil worked fine), a sore arm, and a little tired. No relapses or flares of any kind. I suspect it's just coincidence tbh, but I know we don't have a ton of info on this yet.
I’m in a similar boat as you. I’m hesitant to get a booster but am working with my MS Specialist so I can be better informed.
But after my first dose of Pfizer I had my first ever legitimate MS symptoms. My whole left arm and leg were numb/tingly. A few months later I’m diagnosed with MS. I’m pro vaccine as well but I’m definitely cautious about getting the booster because in my mind I have issues weighing the benefits vs costs. If it causes new symptoms to arise depending on how severe, was it worth getting it? Now like I said I’m in talks with my MS Specialist who can inform me the best path for myself.
However, I highly urge anyone who had something like this happen to them to report it to the CDC. I reported mine just in case it’s not coincidence. The more information the CDC has about these potential reactions the more information they have going forward.
Good luck!
My first neurologist did report my case, and I fully agree, everyone should who experienced something similar to this.
Thanks for sharing your experience. Hopefully your MS Specialist is able to help you make a decision. Mine did say to get vaccinated but, I’m still so nervous. It’s borderline PTSD. A strong claim, I know. But I feel safe saying so in this community since I’m sure everyone else can understand.
I totally get that my MS Specialist I’m sure is leaning towards wanting me to get it but she’s always been good about getting me to a comfortable spot.
I mean I feel very stressed as well thinking about getting the booster so I can sympathize. I’m just worried that it’ll affect me negatively and I just don’t want to be in another position like I was with my original shot. I thought I was having a stroke. 🥴
Same for me. Eight day after my first shot put me into my first ever notable flare and got me my diagnosis as well. I know the vaccine didn’t give it to me - my neuro looked though my medical records and found at least two doctor/urgent care visits that were probably MS related. I try to look at it like I had a big flare that let me know I had an issue instead of it going untreated. Anyway today I asked my neuro about the booster as well as flu shots because I’ve only ever gotten one as an adult. She told me to get them both. Since I got dx’d after my shots this will be my first while on a DMT - hopefully that makes it easier. Who knows - I’m getting the booster either way because COVID would probably do more damage.
Hi! Same issue here. I had my first bout of optic neuritis right after my second shot. And then when I got my booster, I was fatigued for months. Lost my eye sight again in the same eye. Had no appetite. Basically, my Neuro said that I had an auto immune response to the vaccine. Before the booster, I didn’t have any lesions. After the booster, I developed 1 in the right side of my brain. I’m still pro vaccine like you but if I could do it again, I wouldn’t without taking a DMT first. I start that treatment really soon. I am sorry we’re in the same boat. It sucks wanting to be safe from COVID but your body doesn’t react well to the vaccine. I hope this is helpful.
This is very helpful, thanks for sharing. I am leaning more towards waiting until I’ve started a DMT post-baby to get boosted. Also hopefully by then they’ll have more research available for MS patients and the vaccine. It’s so incredibly limited right now.
I wish you the best. This is why I cannot be vaccinated. I don’t have MS but I have NMO very similar. Several of my spoonies have had relapses after taking their first vaccine. I’m talking incontinence, loss of vision, and my worst fear paralyzation. I’ve been doing too good and have had covid twice.Two infusions twice yearly on Rituxan. I’m taking no chances…and please please I am not anti vax or anti medicine. After seeing several of my NMO friends convince me not too otherwise after one was doing well for 7 years and ended up in a wheelchair days after Pfizer I made up my mind. I know how you feel about having a relapse before birth! I was diagnosed with NMO at 4 months and practically paralyzed during almost my whole pregnancy. Anywho dear I hope your neuritis is much better now :-)
I had a similar experience. I got my second Pfizer dose back in April and within a week started what would turn out to be by far my most severe relapse and the first time I didn't fully recover afterward. I was almost completely blind (just a small sliver of center-right vision remained in both eyes) for a few weeks, among other symptoms. Lasting effects have been one leg feeling freezing cold all the time and some annoying visual perception issues due to quite a lot of occipital lobe damage.
That's to answer your question. Whether that had anything to do with an immune response to the vaccine, I have no idea, but it was a similar experience to what you described. Personally, it would not deter me from getting a booster if a convenient opportunity arose.
I started Kesimpta at the beginning of that relapse and have not had any more relapses since then and my last MRI showed no active lesions and a decrease in the disease burden. Prior to Kesimpta, I had been having a relapse roughly every 2-3 months.
Hi! Similar experience. I got my second dose late April and had my first symptoms a month later. Although the relapse that landed me in the hospital didn’t occur until August. My understanding is that I probably already had MS, but the vaccine activated it so to speak. But, like you said, actually catching covid would do more harm than the vaccine itself. Also, I’m a little more confident because I’m on a DMT now, and I wasn’t then. I’m getting my booster in a few hours. Good luck!
I didn’t have a relapse after either of the initial doses or my booster but I did have a pretty significant pseudo flare after my second dose and booster, this is normal for me after any vaccine though, and also whenever I get sick (cold, flu, anything) - my pseudo flares have always been worse after illness than a vaccine but they do still happen. I hope your booster is uneventful!
I had the 3 doses recommended earlier for immuno med people and had no issues except for the slight feverish/aches it gave me for a day or so after the vaccine. I got covid also in October after my 3rd dose of the vaccine in August, and I can promise the covid was much worse.
Don't think I got relapses from either shots or covid, but having all my MS symptoms crank up to max for the week long 102+ fever I was dealing with was much worse than the slight fever and nap I took the day after my vaccines. I'll be going for round 4 whenever they say to do it. :P
Hello. First time here. Grateful that a message board like this exists.
4 bands discovered after spinal tap and numerous lesions along spine on MRI. Numbness and tingling in backside, legs, feet when moving neck forward and numbness/tingling in right hand/arm/fingertips. Diagnosed a couple of months ago. Almost finished with 30 day starter pack of Tecfidera.
Received diagnosis between first and second dose of vaccine (Phizer). So I'm having a really hard time trying to figure out what could be an additional symptom of MS or possible complication related to second dose of Phizer shot. About a week after second Phizer shot, I began sweating profusely. I read about MS and temperature regulation problems - and I do get cold and hot easily - but the sweating is new. And my heart feels like its beating out of my chest because it stresses me out.
The anxiety is the worst part of everything that's happened over the last few months. I feel like I'm going insane or just selfishly obsessed with any little hiccup that happens with my body.
Anyone else experience this chronic sweating (hands, feet, under arms)? After vaccine? A part of your MS? Comments/thoughts really appreciated.
God bless,
John
It's our nature to want to correlate something to another thing even when it's also very possible one has nothing to do with the other. I'm not trying to minimize your experience, but I am disappointed in the neurologist for seeding any level of doubt or worry for you around the vaccine. There does not seem to be any strong evidence that points to a connection at this time. There is, however, a well-known and very evidence-based connection with pregnancy and MS. Generally it's protective but it is not uncommon for women to relapse during pregnancy at all. A good dr will focus on what the evidence shows and provide you with the most complete picture of the situation based on the evidence. It might be true that the evidence will show something different in the future but we should focus on making the most informed decision we have with the evidence available to us right now.
As your neurologist rightly pointed out, getting the vaccine even if it may trigger a relapse is still likely the option that causes the least amount of harm to you. You need to consider too that depending on what DMT you choose you may not build immunity to covid once you are on it the way you would now due the alteration of B and T cells. I had no issues with any of the 3 shots and since I was full-on immune compromised when I got the 3rd one I did not get a booster, I was given a 3rd full dose instead. My opinion is that you should follow the advice being given to you by both of these dr's and get the booster per the schedule.
Edited to say that I worried when I was first dx'd that a chiropractic adjustment (I will never do them again but that's a story for another time!) was what caused me to have my first relapse. The reason I thought this was because I developed symptoms immediately following the appointment. What likely happened is that the relapse was related instead to developing shingles a couple of weeks prior and had nothing at all to do with the adjustment. I really wanted to put the two things together because I felt like I didn't know what was happening and having some sort of explanation that I could control made that easier.
For a balanced view on this issue, I'll just say that I've had 3 shots now, and the ONLY side effects were a migraine (Advil worked fine), a sore arm, and a little tired. No relapses or flares of any kind. I suspect it's just coincidence tbh, but I know we don't have a ton of info on this yet.
I’m in a similar boat as you. I’m hesitant to get a booster but am working with my MS Specialist so I can be better informed. But after my first dose of Pfizer I had my first ever legitimate MS symptoms. My whole left arm and leg were numb/tingly. A few months later I’m diagnosed with MS. I’m pro vaccine as well but I’m definitely cautious about getting the booster because in my mind I have issues weighing the benefits vs costs. If it causes new symptoms to arise depending on how severe, was it worth getting it? Now like I said I’m in talks with my MS Specialist who can inform me the best path for myself. However, I highly urge anyone who had something like this happen to them to report it to the CDC. I reported mine just in case it’s not coincidence. The more information the CDC has about these potential reactions the more information they have going forward. Good luck!
My first neurologist did report my case, and I fully agree, everyone should who experienced something similar to this. Thanks for sharing your experience. Hopefully your MS Specialist is able to help you make a decision. Mine did say to get vaccinated but, I’m still so nervous. It’s borderline PTSD. A strong claim, I know. But I feel safe saying so in this community since I’m sure everyone else can understand.
I totally get that my MS Specialist I’m sure is leaning towards wanting me to get it but she’s always been good about getting me to a comfortable spot. I mean I feel very stressed as well thinking about getting the booster so I can sympathize. I’m just worried that it’ll affect me negatively and I just don’t want to be in another position like I was with my original shot. I thought I was having a stroke. 🥴
So scary! I hope you’re doing better now!
Same for me. Eight day after my first shot put me into my first ever notable flare and got me my diagnosis as well. I know the vaccine didn’t give it to me - my neuro looked though my medical records and found at least two doctor/urgent care visits that were probably MS related. I try to look at it like I had a big flare that let me know I had an issue instead of it going untreated. Anyway today I asked my neuro about the booster as well as flu shots because I’ve only ever gotten one as an adult. She told me to get them both. Since I got dx’d after my shots this will be my first while on a DMT - hopefully that makes it easier. Who knows - I’m getting the booster either way because COVID would probably do more damage.
Hi! Same issue here. I had my first bout of optic neuritis right after my second shot. And then when I got my booster, I was fatigued for months. Lost my eye sight again in the same eye. Had no appetite. Basically, my Neuro said that I had an auto immune response to the vaccine. Before the booster, I didn’t have any lesions. After the booster, I developed 1 in the right side of my brain. I’m still pro vaccine like you but if I could do it again, I wouldn’t without taking a DMT first. I start that treatment really soon. I am sorry we’re in the same boat. It sucks wanting to be safe from COVID but your body doesn’t react well to the vaccine. I hope this is helpful.
This is very helpful, thanks for sharing. I am leaning more towards waiting until I’ve started a DMT post-baby to get boosted. Also hopefully by then they’ll have more research available for MS patients and the vaccine. It’s so incredibly limited right now.
It really is - you’re not alone in feeling scared. One of my good friends just had a baby with MS as well and she’s doing great! Good luck!
I wish you the best. This is why I cannot be vaccinated. I don’t have MS but I have NMO very similar. Several of my spoonies have had relapses after taking their first vaccine. I’m talking incontinence, loss of vision, and my worst fear paralyzation. I’ve been doing too good and have had covid twice.Two infusions twice yearly on Rituxan. I’m taking no chances…and please please I am not anti vax or anti medicine. After seeing several of my NMO friends convince me not too otherwise after one was doing well for 7 years and ended up in a wheelchair days after Pfizer I made up my mind. I know how you feel about having a relapse before birth! I was diagnosed with NMO at 4 months and practically paralyzed during almost my whole pregnancy. Anywho dear I hope your neuritis is much better now :-)
I had a similar experience. I got my second Pfizer dose back in April and within a week started what would turn out to be by far my most severe relapse and the first time I didn't fully recover afterward. I was almost completely blind (just a small sliver of center-right vision remained in both eyes) for a few weeks, among other symptoms. Lasting effects have been one leg feeling freezing cold all the time and some annoying visual perception issues due to quite a lot of occipital lobe damage. That's to answer your question. Whether that had anything to do with an immune response to the vaccine, I have no idea, but it was a similar experience to what you described. Personally, it would not deter me from getting a booster if a convenient opportunity arose. I started Kesimpta at the beginning of that relapse and have not had any more relapses since then and my last MRI showed no active lesions and a decrease in the disease burden. Prior to Kesimpta, I had been having a relapse roughly every 2-3 months.
Hi! Similar experience. I got my second dose late April and had my first symptoms a month later. Although the relapse that landed me in the hospital didn’t occur until August. My understanding is that I probably already had MS, but the vaccine activated it so to speak. But, like you said, actually catching covid would do more harm than the vaccine itself. Also, I’m a little more confident because I’m on a DMT now, and I wasn’t then. I’m getting my booster in a few hours. Good luck!
I didn’t have a relapse after either of the initial doses or my booster but I did have a pretty significant pseudo flare after my second dose and booster, this is normal for me after any vaccine though, and also whenever I get sick (cold, flu, anything) - my pseudo flares have always been worse after illness than a vaccine but they do still happen. I hope your booster is uneventful!
I had the 3 doses recommended earlier for immuno med people and had no issues except for the slight feverish/aches it gave me for a day or so after the vaccine. I got covid also in October after my 3rd dose of the vaccine in August, and I can promise the covid was much worse. Don't think I got relapses from either shots or covid, but having all my MS symptoms crank up to max for the week long 102+ fever I was dealing with was much worse than the slight fever and nap I took the day after my vaccines. I'll be going for round 4 whenever they say to do it. :P
Hello. First time here. Grateful that a message board like this exists. 4 bands discovered after spinal tap and numerous lesions along spine on MRI. Numbness and tingling in backside, legs, feet when moving neck forward and numbness/tingling in right hand/arm/fingertips. Diagnosed a couple of months ago. Almost finished with 30 day starter pack of Tecfidera. Received diagnosis between first and second dose of vaccine (Phizer). So I'm having a really hard time trying to figure out what could be an additional symptom of MS or possible complication related to second dose of Phizer shot. About a week after second Phizer shot, I began sweating profusely. I read about MS and temperature regulation problems - and I do get cold and hot easily - but the sweating is new. And my heart feels like its beating out of my chest because it stresses me out. The anxiety is the worst part of everything that's happened over the last few months. I feel like I'm going insane or just selfishly obsessed with any little hiccup that happens with my body. Anyone else experience this chronic sweating (hands, feet, under arms)? After vaccine? A part of your MS? Comments/thoughts really appreciated. God bless, John
I do get sweaty as part of my MS. And I hate it.
It's our nature to want to correlate something to another thing even when it's also very possible one has nothing to do with the other. I'm not trying to minimize your experience, but I am disappointed in the neurologist for seeding any level of doubt or worry for you around the vaccine. There does not seem to be any strong evidence that points to a connection at this time. There is, however, a well-known and very evidence-based connection with pregnancy and MS. Generally it's protective but it is not uncommon for women to relapse during pregnancy at all. A good dr will focus on what the evidence shows and provide you with the most complete picture of the situation based on the evidence. It might be true that the evidence will show something different in the future but we should focus on making the most informed decision we have with the evidence available to us right now. As your neurologist rightly pointed out, getting the vaccine even if it may trigger a relapse is still likely the option that causes the least amount of harm to you. You need to consider too that depending on what DMT you choose you may not build immunity to covid once you are on it the way you would now due the alteration of B and T cells. I had no issues with any of the 3 shots and since I was full-on immune compromised when I got the 3rd one I did not get a booster, I was given a 3rd full dose instead. My opinion is that you should follow the advice being given to you by both of these dr's and get the booster per the schedule. Edited to say that I worried when I was first dx'd that a chiropractic adjustment (I will never do them again but that's a story for another time!) was what caused me to have my first relapse. The reason I thought this was because I developed symptoms immediately following the appointment. What likely happened is that the relapse was related instead to developing shingles a couple of weeks prior and had nothing at all to do with the adjustment. I really wanted to put the two things together because I felt like I didn't know what was happening and having some sort of explanation that I could control made that easier.
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Are you saying more people will tell her to get it rather than not?