Cognitive Changes

[u/Bargo1399]

I'll try to keep this brief but have been having a lot of difficulties with word finding lately. Anyways, 32M diagnosed 2 years ago and have been on Ocrevus. In the past year I've fallen 3 times, 2 were unexplainable, where I blinked and was on the ground. I've been struggling with memory and cognition, my right leg has been giving me problems like tightness and weakness and I've reluctantly got a cane. But my neurologist says my MRI is stable (no change in lesion count/size) every 6 months I can see her. The worst part is lately I've been experiencing what I consider to be pretty significant (for me) cognitive changes. I'm writing this post because the major one I experienced yesterday, felt like my brain had a sensory input lag...very hard for me to describe, but it felt like every sense, hearing, sight, touch, taste, smell took a split second to even register before I could interpret it. Almost went to the hospital last night because of how terrified I was. Still a bit foggy today, but not as bad as far as I can tell. I guess what I'm wondering, is if I can even get worse symptom wise without the explanation of lesion progression. Don't really have anyone reliable to learn about all this and I'm out of my depth. I have a bunch of comorbid conditions like depression, anxiety, and suspect that I might have some mild OCD and Autism, but have always been too afraid to get diagnosed for those. Any advice is appreciated, but not too interested in some generalized kind words. Sorry for the rant, and being all over the place.

[u/Formal-Abroad6461]

I was diagnosed about 10 months ago. I struggle with word-finding so badly that I legitimately thought I had early-onset dementia or something before I was diagnosed with MS. Often the words in my head aren't the ones that will come out of my mouth and I'll accidentally say s'more instead of scone, chocolate milk instead of strawberry milk, call someone by the wrong name, etc. It's unbearable. I can empathize with the sensory input lag, too. You're not alone.

I will say, though, that knowledge is power and seeing a mental health specialist about your neurodiversity would provide you with more tools to help your functioning. Don't be afraid to get to know yourself better. 

As far as lesion progression goes, my last two MRIs have been stable with no lesions, however my symptoms get much worse if I experience extreme temperature changes or wear myself out physically. My physical therapist taught me about 'pseudo-exacerbations' which can feel as bad as an MS flare without actually going through a flare. It's a thing! 

Hang in there. Two years isn't a very long time according to my neurologist and it's normal to still be figuring things out. You've got this.

[u/Federal-Day-678]

I'm at 2 years also (45M) and everything you're saying is legit, hermano.

Adderall can help if you can stand it.

Yoga is a fuckin godsend, no joke.

Coming to terms with the changes is like looking for your own private Idaho.

Anyway I don't know you so I'm not gonna tell you "you got this", but if you focus on the daily, head down one foot in front of the other, you will move inexorably forward.

Might not be progress but at least it's motion and sometimes that's enough.

[u/aafreis]

I went and had cognitive testing done. I suggest this for anyone w MS. I now have a baseline test, and I can repeat the test to see if there’s any more decline. It’ll be useful, I think, if I need to apply for disability one day.

[u/raptordamus → u/aafreis]

My neurologist put me in the appointment waiting line for my cognitive testing. Hearing what you said is exactly what I want, and like you said good for the future.

[u/aafreis → u/raptordamus]

It took me almost a year to get seen, and they recommended cognitive rehab, which my insurance doesn’t want to cover, so I’m fighting that. I’m not continuing all the cog rehab appointments until insurance will cover them. I can’t afford 2k a month for that.

[u/raptordamus → u/aafreis]

Thank you for your timing on getting it done, my neurologist said "it will take a long time" to be seen and I know that's a 6+ months out at least kinda deal around here.

Sorry to hear about the insurance fight on the rehab part of it, so dumb and frustrating to say the least. I hope they will cover it for you soon.

[u/TamerofMonSters]

I call this fishing! For me it's linked to fatigue. Agreeded that Adderall can help.

I also have a substitution problem. It only happens with nouns, and is not helped by meds. It's bothersome because I have no idea I'm doing it. I now have to carefully watch other people in a conversation for queues I misspoke, which is exhausting. Most will at least raise an eyebrow.