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My ms symptoms came back after my first tysabri infusion

Ive just started my MS treatment, after my first infusion of tysabri, the very next morning i noticed that the pins needles and numbness in my feet had begun to come back. Before the infusion my MS symptoms had nearly completely resolved. And now after my second infusion, they have gotten a little worse again. Has anyone else had this happen.? I told my infusion clinic nurse, who seemed surprised. She emailed my neurologist who said we would discuss it at next appointment in october, and continue with my tysabri treatment. I cant find any info about this happening to anyone!
Im am confused and scared my treatment is doing more harm than good.

  1. Hi , sorry to hear you are going through that, I'm sure it's got to be incredibly scary. I've not really heard of that happening. I would try not to worry though! Many of our symptoms can be easily triggered by things like warmer temperatures and even stress (for more on that: https://multiplesclerosis.net/living-with-ms/what-to-know-about-ms-triggers). Getting your first few infusions can certainly be stressful and that may be the cause. If it is the same symptoms you've had in the past, just intensified and brought to the forefront again, that's likely the case. If they are completely new symptoms, then exacerbation that caused them would have likely been in the works way before you got your infusion. So try not to worry about it being caused by the infusion. It is likely just a coincidence or it's related to something like increased stress (or temps too, many of us are having an uptick in symptoms bc of the time of year it is). I suspect your neurologist thinks the same if they wish to wait for your next appointment to talk. There are times when something like this happens and many people will jump and will think "Oh the medicine isn't working" when in reality, it takes being on it a while (for some treatments, you really need to be on it close to a year for a real difference) before it really has an effect. So do your best not to worry (easier said than done, I'm sure) and please let us know if anything changes!

    1. So often it takes a crack detective to investigate and identify what is causing symptoms, and even then the answer might not reveal itself! Good that your neuro will talk to you about it, and maybe then you can rest a little easier. I support Devin's perspective on what might be causing those symptoms to return. And I hope his thoughts will help level out your worry too. Keep us posted on what you find out and whether the symptoms have changed, won't you? Hope you find relief very soon! --Warmly, Kim, moderator

      1. Thank you Devin and Kim for replying to my post, it was my first time actually reaching out to other ms people, u are real !. And thank you kindly for your advice. Was only diagnosed in may 2022, and still trying to get my head around everything.

        1. You are very welcome! And it is so awesome that you reached out to us for feedback so early on in your treatment and so soon after your MS diagnosis. Good that you started treatment so soon after your diagnosis, too! You are already doing the right things to take care of yourself. Self-advocacy is what is going to help your medical team take better care of you 😀 You are already self-advocating by coming here. Please do come back 😀 --Kim

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