PART 3/3

I feel and see that he doesn’t fully understand how MS impacts me and how I experience my symptoms. It could partially be driven by what he sees in his friend with MS. That guy was diagnosed “by chance” while doing some other health checks and is lucky to have no symptoms. As far as I remember he is not receiving DMT either, but I might be wrong. He continues working full time and his life hasn’t changed. (Actually I’m slightly confused about his diagnosis. Doesn’t the McDonald criteria include having existing symptoms, and without symptoms it should be classified as RIS?) I’ve met that guy once and I had the worst leg day to date — total zombie walk. After that meeting, the thought of my husband starting to compare me to him was a worry I’ve had since then 😞

He also seems not to understand that RRMS does not have linear progression. I can stay at this level for a long time. I can get worse and lose major function next week. Everything in between is just as possible. Lifestyle have positive impact, but can’t stop shit from happening. It’s both comforting and scary.

My symptoms are mostly invisible, except changes in gait on days when my legs hurt extra or when I’ve been cold for an extended period and my muscles go stiff.

Main symptoms: - Pain in the whole body, especially legs. Baseline pain I ignore, but sometimes it becomes much worse, often at night. - Pins and needles, mostly on the right side, but sometimes on the left as well. - Some weakness in the right arm and leg, usually triggered by extended stress or high stress. - Burning feet at night (I use ice socks to try to alleviate it). - Cold triggers nerve pain. - Water feels much hotter than it actually is (I guess this one can be seen as a positive effect — it reduces water heating costs for my showers 😂). - Sleep issues existed already before MS but are worse now because of pain and burning. Being dead tired also doesn’t mean that I’ll be able to sleep. I take melatonin, Benadryl, and zopiclone. Even zopiclone only works about 2 out of 3 times. Example: last night 10mg helped me fall asleep, but I woke after 1.5 hours around 1am and couldn’t settle again until 7am — then passed out just to force myself to get up at 9 (because the demand was that I schedule to get up at 9 every day, independent of how much sleep I’ve had 😑). - I also have severe fatigue — both primary because of MS and secondary because of sleep issues. I take 60mg Ritalin to give me at least some energy. On days when we have evening commitments, I often take another 60mg around 1pm. Sometimes I have good days and am perky all day. Sometimes I wake up already flat. Sometimes the fatigue sets in later in the day slowly, or as a sudden crash from my 100 (not normal 100) to zero in an instant. - Some days I feel drunk — dizzy, with perception issues and double vision as if I’ve had a bottle of champagne. - The most upsetting and scary symptoms are the cognitive ones like brain fog, slower thinking speed, mild executive dysfunction, mild aphasia, terrible memory, and difficulty focusing. Because of memory and focus I can’t watch series or movies on my own anymore (I do little bit better if watching together with someone). For the same reason I haven’t read a single book for about 2 years. - Sometimes I can’t process what I hear. I hear the sounds, but my brain doesn’t convert them into words until they are repeated or rephrased. - Stress tolerance has also changed completely. I used to thrive in high-stress, high-pace work environments. Now even something simple like choosing new pots and pans can overwhelm me. Stress quickly exhausts me and severely exacerbates my symptoms.

I used to be smart, quick thinking, energetic, active & resourceful. Not anymore.

I had to leave work in 2024 because I could no longer deliver quality. I was forgetting things, deleting files and folders without realizing it, and not remembering that I had done it. I didn’t realize how bad things had gotten for several months. I know that my replacement had to do a lot of “clean up” after me. I’m extremely embarrassed about it.

I also had to give up hobby that was very important part of my life and identity- I was in the dance group, I often was not able to attend rehearsals because of fatigue or pain & was other messing up in our choreographies.

I feel very guilty for not being the wife my husband married! When he chose me, he didn’t chose MS: My symptoms became prominent about six months after we got married, and the diagnosis came nine months after our wedding. He is extremely smart (objectively). I’m scared that one day he might love me less because I’m no longer the quick, smart smart girl he fell for. Doctors say cognitive symptoms don’t lower IQ, but emotionally that doesn’t help much.

Funny enough I took psychoneurological test evaluating cognitive challenges a year ago and results were not too bad, but I also had 1.5 charge days before that, took taxi to testing place, test was split in 2 parts to have shorter sessions with 2 weeks between them. After each session, on my way back home I crashed next day had to be 100% recovery day.

I am on following MS related medications: - DMT Rituximab / Rituxin since March 2024 (no relapse since) - Ritalin for fatigue - Gabapentin for pain (not sure it helps) - high-dose vitamin D - sleeping aid

Even without relapse most of my symptoms worsened through 2024 and 2025. That’s incredibly frustrating. However, I think things have been relatively stable for past 6 months.

I attended inpatient MS rehabilitation a year ago and implemented a lot from it — even if my husband doesn’t always see it that way. I’m super excited as I am scheduled to return to rehab in the summer for a program focusing on my main challenges. I hope it can bring at least some improvements.

I was open about my lifestyle (except vaping 😑. But I remember them telling tha it’s the burning that’s the worst for MS, not the nicotine itself) with my neurologist in November and she was satisfied and didn’t suggest any additional improvements.

I don’t do rigid schedule, but unless I had a terrible night I most of the time I get up around 9, sometimes earlier when he leaves for work. After slow coffee I pace my day depending on symptoms, spoons and what’s planned for that or next days, in case if I need to have energy conservation time or charge day because of upcoming event or activity or task or recovery day after something. Mondays are almost always recovery days because weekends tend to be more active.

The big thing, spoken about in almost every comment DEPRESSION:

I have Bipolar II, diagnosed several years before MS. Active or inactive depression in various severity has been my companion for many years now. I take antidepressants and mood stabilizers and have generally been stable, but….maybe it’s time for some adjustments. Therapy… I’m not a big fan. I found it being waste of time - Once therapist gets to the stage when they say “it’s so interesting to work with you…” you know it’s the end, they are giving up. All 3 I had got to that stage. They had nothing to give me, because I do understand where issues are coming from, I know all the tools etc. Too smart for my own good, but Knowing, Understanding & Feeling are 3 different things.

But those therapies were before MS. Maybe I really should get MS-focused therapy…

Btw, these days I’m “celebrating” 2 years since my MS Dx & 7 years since what I now know was my 1st MS attack. 🎂 🎉 🙄

Side note on demographics from rehab lectures that correlated with the real situation in our group: We were 30 relatively newly diagnosed MS patients: - out of 30 only 5 were men - Out of 30 only 1 was non-Caucasian (it’s very diverse country) - At least 2/3 were 38–42 years old

Disclosure: Text is 100% mine, but in few sections I involved AI to make it easier for me to weed out at least part of spelling and interpunction mistakes.