Last reply 5 months ago

I’m new here and it said to introduce myself, so here we go:
I’m 40, married, no kids, and I was diagnosed June 2018 during my second hospitalization that spring for paralysis, numbness, pain, and other MS-y stuff. I am lucky in that I presented pretty classically for MS, ticked most of the boxes, and the lesions in my brain and the transverse myelitis in my spine were pretty clear. (Although the first attempt at diagnosis was “a stroke, but more likely brain cancer…”) But it did just kind of hit me like a bolt out of the blue. I went from being very active and training up to do a solo portage trip to learning to walk again twice in one year.

Where I’m at now is that I’m off on private insurance disability, which will end in the spring. My current plan involves freelance copywriting, since I can manage my good hours and not waste my productive time commuting. Fatigue and pain are my main challenges right now, along with getting my head straight.

I’ve been on Tecfidera for a year, and my relapses aren’t as bad, but my new neurologist (the old one… is a long story) thinks it’s time for a change. I’m scheduled for an MRI on a newer machine, and he’s trying to get me into a chronic pain clinic. My day to day involves getting foggy and having to sleep in the afternoon, but I still regularly have days where I’m too fatigued to accomplish anything. Going back to my office job just seems unlikely. But it’s also hard to tell from the outside, because no one outside my family really sees me when I’m fatigued, and I don’t really look like anything’s wrong right now.

I’ve been slowly improving my physical conditioning, and I am getting better, but it’s frustrating when an episode wipes out weeks of progress. But what else can I do but start pushing the rock back up the hill? The goal isn’t the top of the hill, the goal is to keep pushing. At least that’s the mindset I’m trying to foster, with meditation and therapy.

I’m hoping to get a bit of community out of this, to chat with people who understand what it’s like to have MS and how disruptive it is, but also how everyone is facing the challenges and finding accommodations and success dealing with all this… stuff.

Thanks for reading this far; I’m funnier when I’m not having a rough pain day.

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5 months ago

Hi @anaemicmonkey. Your story will resonate with a fair few of us. It is not uncommon to be viewed quizzically, as MS is an invisible condition, i.e. we look so well. The only people that will understand your MS is those of us who have MS.

It’s good that your Neuro is reviewing the performance of the Tecfidera, with a view to trying another approach.

Please continue living your healthy lifestyle and “pushing the rock”. But, do “listen to your body” and practice moderation. A healthy, balanced diet is also good.

There’s a lot of us that believe that stress is a major protagonist for a relapse, so is best avoided.

5 months ago

@anaemicmonkey, I so relate to pain and fatigue as the biggest challenges, they are certainly my demons. I also “look” fine, whatever that means, and it’s both hard to explain to others and even to ourselves sometimes why life can be so difficult.
I never thought having MS would be my full time job. Disruptive is a good word to use. And pain days are never funny. 😏

5 months ago

Also on Tec nearly a year now. I don’t like it but when I was on it before for about 8 months, I had no new or active lesions. Went back on it last year just before Christmas as things were getting much worse. Now I realise that it was the progression of my MS that was marching on relentlessly – as it is to this day. Told my neuro in September that my left side (my good side) had been getting much weaker and that I was experiencing foot drop (also have that on my right side). She asked me to walk a few steps to the door then said in a bored tone ‘I’ve seen worse’. I was so shocked, I couldn’t say anything. She left the room and that was that. I have an MRI in February, so we’ll see what the score is then. Pretty sure I’m now PPMS or even SPPMS. Just waiting for that axe to fall! I’m a very positive person and although there are stresses in my life that I cannot avoid, I do protect myself fiercely. I think you have to. I also smoke a fair bit of weed when I can get my hands on it. Highly recommended. Wishing you well & thanks for the post 🙂

5 months ago

Hey @stumbler, thanks, that’s all good advice that I’m trying to follow. I’ve heard the thing about stress and relapses theorized, but it’s good (?) to hear other people have made that link, because it lines up with my experience. It’s one reason my old job feels like less of an option (significant stress environment). I think I should probably dig through here for career topics. The stats for work and MS are pretty bad, and I want to be in the working part of the group.

Hey @rivka, thanks, good to know it’s relatable, at least, but sucks that you have to relate. Some things were easier for people to understand when they could see my cane and physical condition. Once I no longer needed the cane, it felt like people expected me to be okay now, and I think I did too.

Hey @wobblygirl04, thanks! Oh the joys of Tec… I tolerate it okay, with some stomach issues they solved with pantoprazole. You say it isn’t great for you, are you getting other side effects? That response from your Neuro is outrageous—so many people have dr stories like that. I’ve been pretty lucky in terms of care and manner of the drs I’ve had assigned to me (except one in hospital who I think tried to give me diagnosis while I was doped to the gills; my roommate had to later explain to me that I had even spoken to him). Wishing you well too, and hoping that your axe holds for awhile yet. (Ps – I’m a little jealous you can partake, but mostly glad you have found something that helps you. I’m too sensitive to THC, even a low ratio CBD oil at the dosage I get any relief from makes me ill!)

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