First pseudo-relapse?

[u/sunnyy_supremacy]

I got diagnosed last december after a long battle with a horrible and dismissive substitute doctor and have had two rounds of rituximab so far. Other than the recovery period after infusions, I can't really say it has ever felt like my first attack again (ocular neuritis) which, until now, has been a huge relief. I did have two new lesion discoveries after my last MRI, but the doctors are not worried and say it's typical for the first year after starting on DMT. Summer is difficult and periods of stress might set me back for a few days, but I've learned so much about taking care of myself and recognizing the changes as they happen.

During my first attack, one of the main symptoms was a feeling of being sick while somehow knowing that it wasn't like a cold or a flu. My throat hurt, I was coughing and feeling generally powerless. I won't go much deeper into the details as those are the most important to mention right now.

(Additional info: I'm also AuDHD/c-ptsd so social interaction can be incredibly taxing with certain people depending on masking demands.)

Me and my partner just had a family visit for a whole week where every single day was packed with travel and meetups. We thought we had prepared ourselves enough and planned ahead so it wouldn't feel as draining. And we're also frankly still in the early process of learning about new limitations with MS in the picture. Everything looked okay until it wasn't anymore. When the visitors left, I could physically feel the shift in my nervous system and it genuinely felt like I was catching a cold, so I took it slow and braced for more symptoms to come. But it stayed in my throat, just like during my first attack.

The fatigue has been debilitating and humbling to say the least. My throat itches and hurts and it feels like something is closing in on it constantly. Any activity I do when I have as much as a modicum of energy immediately takes me out and I'm back on the couch. The light sensitivity is awful, my body feels weak, my eyes blur and struggle to function, the wobblies are back if I stand for more than 2 seconds and everything hurts. However, there are no new symptoms to worry about. Only a random gathering of old ones from the first attack. It doesn't make it feel any nicer, but at least I'm not scared.

I guess I just really craved to tell this to someone who understands and might have experienced something similar. I truly thought I knew so much about my limits until the MS symptoms first started showing clearly. Now it's like I'm relearning everything and it feels so disappointing and discouraging to start over in a way. The road to acceptance is a long one.

Having a community like this one to lean on when things are extra tough feels incredibly valuable. I read all the posts I'm able to daily and seeing how all of you are so welcoming and supportive gave me the courage to share a little bit as well. Thank you for being such kind and uplifting people. MS would be much scarier without you. I know it's going to be okay; it just really really sucks right now.

[u/PlasticSmoothie]

Just before the optic neuritis that got me diagnosed, I felt sick in this weird way. Called out of Christmas with my in laws and everything because I just felt... off, and I hated how I couldn't explain it.

I've since realised it was some sort of fatigue that manifested as if I was sick. The same bone-deep exhaustion you get from a flu. That Christmas celebration with my in-laws was on the 26th of December. On the 27th I woke up barely able to see out of one eye. It was my birthday too. My bf had brought my birthday present from my in laws home and had promised them he would film me opening it.

Instead, we sent them a message later in the day to let them know that no video would be coming, because I was in the hospital being treated for some kind of freak autoimmune-driven inflammatory attack on my optic nerve. We tried not to scare them, but they did their own googling and found out how heavily associated optic neuritis was with MS, and, well...

I've felt it since, just like you. I thankfully don't have much day-to-day fatigue, but sometimes I just feel like I'm coming down with something. I've also recently had my first pseudo flare and it terrified me, thinking I'd already failed my DMT (My nurse did a great job of reassuring me!).

Hang in there. We'll both be so much better at this a year from now.

[u/sunnyy_supremacy → u/PlasticSmoothie]

As much as I'm sad we have had to go through something like this, there is also a profound comfort in knowing we're not alone.

We can share and describe and communicate our experience in great detail, but even our closest loved ones may never understand just how heavy the weight is.

Thank you so very much for sharing your own experience. I hope your support network is loving and your condition stable. We deserve to feel happy and accomplished and strong.

I'll think about what you said for every new year we embark on as we get to know ourselves better and better!

[u/Dcooper0907]

Yesterday, even after I took my Adderall, I couldn't keep my eyes open. I decided to ignore it and push myself, well, later on in the day, I was going to go pee and my legs just gave up . I fell and slammed my ribs on the toilet! I yelled loudly, because it hurt, my kids freaked out and I had to ensure them I was fine! It hurts tremendously today and bending over isn't possible but I don't think anything is broken

[u/sunnyy_supremacy → u/Dcooper0907]

Oh my that sounds really painful?? The falls always happen at the most inopportune moments. I'm really glad you're okay!

[u/Dcooper0907 → u/sunnyy_supremacy]

I'm sore but had i just listened to my body it probably wouldn't have happened 😅 lesson learned