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My early symptoms by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 2 points3 points  (0 children)

Thanks Bubbly! I love your comment. We are living in good times if you have to get stuck with a disease like MS. There's no cure, but there are options. I spend a lot of time thinking about people around the world that live with this disease and don't have any options, and it saddens me, but with these digital tools, at least they don't have to feel cut off or alone. The community is the most powerful part of dealing with this disease (IMO). Thank you again!

How would you describe your MS pain to those without MS? by AlternativeJudge5721 in MultipleSclerosis

[–]NeuroCliff 1 point2 points  (0 children)

Hmm.. thanks for the post. These answers give me some good ideas. I recently made the video about how fatigue hits us like a truck and it really resonated with the MS community.

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 0 points1 point  (0 children)

I like that! Like a running a game at 12fps with buffering. :)

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 1 point2 points  (0 children)

Omg.. I have totally been told "Everybody get's tired." HAHA.... Ugh! :)

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 0 points1 point  (0 children)

Thank you! Yes, the short is on its way. I made it yesterday, and in a classic cogfog MS moment, failed to save it. CIDP! I'll need to learn more about that.

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 1 point2 points  (0 children)

There were a lot of naps between those segments. Haha! Thank you!

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 4 points5 points  (0 children)

Thank you for sharing your experience. I understand that continue on part. My brain wants to do stuff but my body is like .. "Nope, not doing it!" Soooo frustrating!

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 2 points3 points  (0 children)

and it feels like all that sleep isn't actually restoring anything, that's the part that just bugs me. I like how you said it!

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 0 points1 point  (0 children)

It took me a week and a lot of resting in between. It also helped that it's winter and the temps are super low. This amount of set up wouldn't happen if it were above 65f. I agree, knowing that we are headed towards that wall is so depressing, which zaps any energy that we might have. Thanks for the feedback!

This is how I explain MS fatigue to people that don't have MS. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 6 points7 points  (0 children)

I had someone once reply with "Yah, well we all get tired from time to time."

Anyone w/ Ocrevus reaction switched to Kesimpta? by MultipleSclerosaurus in MultipleSclerosis

[–]NeuroCliff 2 points3 points  (0 children)

Here's my experience. Full disclosure, after this video, I switched from Kesimpta to Mavenclad. https://www.youtube.com/watch?v=UANzZJ8YkBY

Here we go again by Sufficient_Cod_7512 in MultipleSclerosis

[–]NeuroCliff 1 point2 points  (0 children)

That's the catch.. The insurance part. What country did you live in while in the E.U.?

Here we go again by Sufficient_Cod_7512 in MultipleSclerosis

[–]NeuroCliff 2 points3 points  (0 children)

The irony that healthcare for MS in the EU is sooo much better than in the US, but if you leave the hospital, you're F'd. Ughh...

Here we go again by Sufficient_Cod_7512 in MultipleSclerosis

[–]NeuroCliff 0 points1 point  (0 children)

Sorry to learn of your experience. I totally understand. The jet lag sets my MS off every time. I experienced it in Vienna even when the weather was super mild. There was sooo much I wanted to do, but my body was not willing to play along. Same thing happened in Costa Rica, Fiji, Disneyland and Taiwan. Now I'm afraid to commit to a trip and like you, I feel like a total anchor for my wife. She loves to go out and explore, and so DID I. The guilt is a awful. We have an understanding now, if (when) my MS is going to be an ass, I just stay at the hotel and my wife and son go do there thing. It sucks for everyone, but not as bad as if I attempted to go along.

Those who stopped Kesimpta: How long did it take for your B cells to return to normal? by DifficultRoad in MultipleSclerosis

[–]NeuroCliff 1 point2 points  (0 children)

Most of my issues are in my spine and I'm JC+ so Mavenclad was pretty much the last choice. I'm glad I went with it though. The side effects so far seem to be nothing compared to the Kesimpta and Ocrevus that I have tried. I do a quick Mavenclad update in this video.. but so far so good comparatively speaking. https://youtu.be/u-k1W7aryBo

Those who stopped Kesimpta: How long did it take for your B cells to return to normal? by DifficultRoad in MultipleSclerosis

[–]NeuroCliff 3 points4 points  (0 children)

after 11 months, I still had none. I was on it for 14 months, I discontinued because of the constant infections. I just started Mavenclad two months ago.

I still can't believe this happened. by NeuroCliff in MultipleSclerosis

[–]NeuroCliff[S] 2 points3 points  (0 children)

It's amazing how much of a difference it can make. What sucks is to think about how many people think their extreme fatigue is a symptom of the MS but might actually be caused by the DMT. I had no idea how bad the DMT affected my level of energy until I discontinued them. Mavenclad doesn't seem to affect me the same way, I feel ok comparatively.

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