Reply To: Thinking in the future

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1 month ago

That was a strange comment! and very insensitive. The fact is that while they can correlate the location and number of lesions with some of the impacts it is clear that there isn’t a straight line correlation. Our body has an amazing ability to “rewire” around damage and repair itself. We don’t even really understand how. Some swear by a certain diet that gives it the building blocks, some try herbs or supplements while others do exercise. Many people report amazing results. I push a bit down those angles as well as have been trying to increase my sleep and reduce stress which are both big factors. There is a guy on You Tube (Life of Seb) that is a Yogi and has some great programs, I think a Neuro looked at his MRI and made a comment that he had no idea how he was still standing ;-0 and he is amazing! the fact is that what shows up on an MRI doesn’t correlate directly to our condition or prognosis. They really don’t understand it that well. Some people only have one lesion and are severely impacted or they can’t even find the lesion! So they may have just been displaying that they aren’t very familiar with MS or haven’t seen many patients with it.

I’m also holding out hope in the remylination studies and the great strides research is making. I was Dx in 2005 right after the first DMTs started to be commonly used and was put on Copaxone. It may have helped some but is now felt to be not very effective with so many other choices out there. I have switched over to Ocrevus and keep an eye on stem cell work and other advances. There are too many things that I still want to do and see. I did try to push through things that were higher priority to make sure that I could do them while fully able (like travel to Hawaii, snorkel in the Caribbean, and see the Grand Canyon and some of the national parks) and made sure to set myself up in a house that is friendly if I have physical decline. I also heavily invested in retirement funds well earlier than a typical person…but those things I just think are prudent for about everyone, no one knows what the future holds. At least I have a good idea where my challenges will come from 😉

So- I’ve planned for the worst but hope to make the best of it. While the world may give me lemons I hope to make a passable lemonade…