6 months w/ MS - i eat gnats & spill wine

[@maryoberlehubley5552]

Thanks for your video. It was fun watching it! My diagnosis was 40 years ago, of r-r like yours.

[@irenenaughton6381]

Good video. Only been diagnosed in last few months in England and am listening to lots of you tube videos and agree doctor boster has good videos but it is hard and hope it does get better and your video did mirror my thoughts so thank you

[@KosmasMJpec]

The things that helps me: 1)Boundaries 2)Therapy with a good psychologist (it's not easy to find a good one) 3) Music! 4)Communication with people that know something about MS (at least know something,I dont expect from everyone to know about MS) 5)Nintendo Switch :) 6)The big help is that Im taking part of a clinical trial. In the trial you get "Fenebrutinib" which is the new drug or you are getting "Ocrevus" or placebo. I think the new is placebo and the Ocrevus is the original. I don't feel progression but me or my doctor don't know if I'm getting the original or the placebo and I didn't do MRI after taking it.The next days I will find out what's happening when I will do. 7)I eat a lot of fruits 8)You are helping me with the videos :) Good day to you and your husband :)

[@_alexandraraye]

thank you so much for sharing what helps you. ah, music, how could i have ever left that off! how is your clinical trial going? what are your favorite fruits?? i hope you're having such a good weekend, kosmas!

[@KosmasMJpec]

@@_alexandraraye For some reason yt send me now the notification about your answer :p I'm doing ok. In 4 of January I will know the result of the MRI..Good Christmas to you and your husband and family Alex :)

[@donnamoore8479]

Good to see you. I had some of the same things occur in my early days of diagnosis. Relapsing and remitting diagnosis now seems to me to be a misnomer. In my experience, it seems that some damage is always there..I like that you are making the necessary adjustments in your life. You take care.

[@_alexandraraye]

totally agree you with you, donna - i think it's a misnomer too. it kind of just lingers for the most part. i hope you're having a great weekend! thank you for watching, as always!

[@maryhedl7664]

Your titles crack me up! Chronic illness sucks, I couldn't imagine being so young and sick, too. Thank you for sharing. It was very informative. Have a really great week!

[@_alexandraraye]

LOL! i try to reel people in without ever lying. yes, it really does suck. i've been through so many "why" days, but thankfully those are being less and less frequent as i move towards full acceptance. it's a journey for sure! i hope you're having such a great weekend!

[@lindsayclark934]

When your hands went numb, were they pale, white or blue, even just fingertips? It could be secondary Raynauds. I've been diagnosed with that for years and it flares and remits too, slso autoimmune. The itching is a nerve thing and I've had it be super intense once didn't know what it was at the time. I had deep purple and blue bruises on my front top legs. Don't know what that's called right now. Lol

[@_alexandraraye]

they weren't, no. was the color difference what lead to a diagnosis for you? i have a couple friends with raynauds but admittedly i know very little about it. oh my goodness, your bruises :( not fun at all! the itching drives me bonkers lol

[@larsgreen4292]

the guy in background helppppppppppp.... shut up 😂😂😂

[@ast3077]

Cheers

[@__Wanderer]

Thanks for the update Alex :) It's been about 6-7 ish months since my first symptoms and about 3-4 months since diagnosis. Although since day / week one they were already almost certain it was MS. Reddit has been great for getting new perspectives that is for sure! I've also been binge reading google scholar articles # not healthy 😂but i too like graphs / data. science ftw. Although I feel I was overcompensating for the lack of information I initially received. I received no info from my neuro / nurse, even about treatment options. Quite literally within a 10 min meeting I was told I had MS and booted out into the wild 😅 was pretty rough - apart from my semi-blind left eye (that hasn't / likely won't heal at this point) I too also have slight numbness in my finger tips occasionally. I also feel that I am more forgetful that usual - although this is quite subjective as it is hard to quantify such things. Either way I will take that any day as long I don't get another large flare for 10 years preferably... 😅Think that's what I'm still a bit worried about, the uncertainty, but as your therapist said likely with time this will reduce. I imagine I will also (hopefully) be far more relaxed over another 2-3 years when I get an idea of how active my MS may be. Naww about the sweater, good excuse to get another though ;) I'm happy that you are doing well 😃 edit* also take turmeric on the daily now! :) if it's been used for several thousand years that's good enough for me :)

[@_alexandraraye]

wow, you really took initiative to be armed with info! i admire that about you. yes, the uncertainty is definitely..... a source of anxiety for sure. similar to you, i think i will be more at ease in a few years, too. how is the turmeric treating you?

[@lanamichalski3208]

This was a great video again....the yellowing of your teeth could be from the turmeric. When you were doing the list, I heard a baawing or bleeting sound in the background. I was wondering if that is a goat or sheep? Whatever it is was so cute to hear. Any signs of "Little Romaine"? (The baby bunny).

[@_alexandraraye]

haha, it's a little baby goat that LOVES to sing his songs all day! i think our neighbor has two now maybe. we can't see them but we sure can hear them :) and yes! we saw Romaine a few days ago but not since. i'm planning to leave some lettuce out again to see if he's hanging around!

[@VerbalOnLife]

Great video thanks for the info 👍 …Trump2024 😂

[@cathykieta493]

❤