I’m not sure I do, I tend to think of what I used to do when I attempt to do that now. Everything takes longer and I still grieve how much quicker I could do that same thing before.

I know I am not the same as I was prior to my MS diagnosis and I have my fair share of difficult days but I cannot let this control me. I know for whatever reason…

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Sometimes it’s easier to say”I’m fine” or “everything is good”. Definitely understand the grieving part. Adapting to the change is not easy, making reminiscing on the past a habit. How do you deal with that?

I agree, I always say I’m fine when asked how everything is. So far from the truth but what I say. People have no idea what I have been diagnosed with (my choice, it doesn’t benefit them to know) so it’s always – all’s good.

I’m 4 years into this journey and I’ll be honest, I hate not being the me l used to be and grieve that. I’m navigating…

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Keep us posted!

I think this is similar to the one I was currently looking at! We shall see in about 3 weeks what the status may be, for a Nov like infusion!

Responding ‘I’m fine’ has never really been about how I feel over the 44 years since my diagnosis . It was to avoid conversing with people that either didn’t really care or just wanted to tell me what I should do to feel better. It’s tiring listening to all the ill-informed experts out there. My world is smaller now and zen.

Here is the latest news on CAR-T therapy: FDA clears CTA313 trial for progressive MS, autoimmune diseases

I’m not sure if you came across this, but take a look!

Any thoughts or discussions on newer CAR-T therapy? I keep googling it and end up around what seems to be a dead zone. Would like to see more about it, even if it is phase 1b trial…outcomes look promising from what I can see!

I understand the newer CAR-T drug, have been assessed, but my neuros switched in the process. I meet with the new guy in about 3 weeks, and can only hope and pray that I am still a candidate.

I think my EDSS came in around 4, still mobile, but can’t drive or work!

Areli’s, thanks again for mentioning!

Support can come from many places, but unfortunately, not everyone has it.
This could be family, friends, neighbors, groups, care team, and more!

Do you have support, or do you feel like you need it in your journey with MS?

I always add two or three points (1-10 scale) onto what I think I’m feeling at the time.

As the chronic pain becomes “normal” after a while and your body gets used to it, so it masks it for you to cope on a day-to-day basis.

And be as vocal about your symptoms as much as possible with any medical or allied health staff… If anything, they…

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I’m interested in reading the results of this study, which focuses on cognitive symptoms and uses a coaching app. 🤔

Read about it! Would you participate?

Trial to target MS cognitive symptoms with mindset coaching

This is true, and I like how you broke it down! Many patients don’t look at tests/trials this way, but it’s understandable since they want/need the treatment. There’s a process behind these treatments and studies that many don’t understand.

No I never down play it. Squeaky wheel gets the oil!

It is unfortunate, but I understand. To get a new treatment approved, especially in the phase one part of a trial, the manufacturer needs good quality data in order to prove that the therapy is safe and effective. I might be in desperate need of a therapy and at this stage, very accepting of risk, but I would not provide the measurable…

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It’s unfortunate that you wouldn’t be able to apply for the clinical trial. Are you still moving forward with Ocrevus or taking a break from treatment?

There’s only one option right now for my primary Progressive MS (Ocrevus) and unfortunately it doesn’t penetrate into the CNS very well, so I am anxiously awaiting an alternative. I’ve been a little disappointed with the BTK inhibitor so far, but if one shows the same effectiveness as Ocrevus with better CNS penetration, I would…

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For those on a DMT and needing/wanting to change it, are there any treatments that you have your eye on for when it’s approved?

😮🙁 Sorry that happened! I can’t believe they dismissed something like that. Do you think they start to act this way once you mention “it could be a side effect from X treatment “? Not sure if that’s the case for you but I would experience a tone shift the minute I would bring this up.

Wow! Treating the patient instead of the chart. What a way to put it. 📌

It’s unfortunate that you can develop a relationship with your doctor or team and they start approaching things this way. It can make the patient lose trust not only on their current doctor but the whole care team.