Thank you! I am happy to say that, even though it's been nearly three years since I recorded this video, I'm pretty much at the same level of disability. I am definitely grateful for that!
Thank you for this video I am happy to hear you still enjoy life. I am going down hill but still keep thinking positive. Trying to keep on trucking😊...
Thanks for that. The thing about secondary progressive MS, at least in my case, is that going downhill is a pretty gradual process, and I intend to resist as best as I can! Take care. 😼
I'm so glad I found your TH-cam channel! When I was finally diagnosed in 2014 at age 39, I'd been brushed of for years. I'd even stopped complaining to my Dr because he always had a simple reason for my symptoms and I didn't want to Cecil considered a hypercondriac. I be always been a tired person and my dad would say I'm lazy, my Dr would say its because I have three kids and earning my bachelor's degree in my 30s. Today I go to bed around 10:00, get up with our 12 year old "baby" to be sure she gets ready for school and on the bus in time, then go back to sleep until my husband wakes me up around noon. If I'm not awakened, who knows how long I'll sleep! Ive had several other symptoms that have come and gone, but some have never left, like trouble word finding, the feeling that I'm on a tilt 'O whirl, saying "yesterday" when I meant to say "tomorrow," 2010 when I mean 2022, April when I mean August, and etc! I insist that I'm right when my husband corrects me (and I later realize I'm wrong), and on and on. I can relate to everything you say, even though we have our own MS differences. My doctor says I have Chronic Progressive MS which is essentially SPMS, but you explained quite well that it's because some symptoms never go away. I'd thought it was because my MRIs have been "stable" the shoe time Ive been on Rebif (since February 2016). Plus, I stopped working my 20 hr/week job in September 2015 and can rest/nap whenever I need. And no more stress over simple job tasks I could no longer do. I love the thought of not giving myself shots 3x weekly, but for now, if it's part of the reason why Ive had no new symptoms and no new lesions on MRI since 2015, I'll keep going. Thank you for comparing MS notes with me! 😘
@@jenniferroshto7377 I've had that happen too, especially now that my fingers are numb and dumb! Thanks for describing your MS. I relate to the "Tilt-a-Whirl" analogy! While I haven't started mixing up words yet, I've found that I sometimes lose my train of thought - nothing serious, but bothersome none the less. I'm glad your DMT seems to be helping you stay stable. MS is such a strange animal; not even our doctors really understand our experience. You clearly haven't let that get you down - I can tell you've kept your sense of humor. Thanks so much for your comments.
@@youandmeandmultiplescleros402 In reality I'm an upbeat lady like yourself, laugh a lot and love my bed 🛌 amongst other things. Thanks for the reply it means a lot 🙂 😊
Thank you, Mona! I do make some notes, but it's mostly ad lib. I more or less have to. My eyes don't like to refocus quickly between notes and screen... :-(
@@TankoxD I was on Copaxone for 10 years (~2002-2012), but once my diagnosis changed to secondary progressive, my insurance stopped covering it. I haven't been on any DMT since.
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Pam. Just found your channel. We have our long years since fiagnosis in common.
We do indeed. I believe you said 35 years in your comment on another video?
This was a much needed video. It went right to the soul, especially the end. Thank you.
Thank you! I am happy to say that, even though it's been nearly three years since I recorded this video, I'm pretty much at the same level of disability. I am definitely grateful for that!
I’ve had ME/CFS since 1979. Now at the age of 67 I am being investigated for autoimmune diseases and MS is being considered.
The journey's twist and turns never seem to end, do they? Has something changed that's making MS look like a possibility?
Thank you for this video
I am happy to hear you still enjoy life. I am going down hill but still keep thinking positive. Trying to keep on trucking😊...
Thanks for that. The thing about secondary progressive MS, at least in my case, is that going downhill is a pretty gradual process, and I intend to resist as best as I can! Take care. 😼
I'm so glad I found your TH-cam channel! When I was finally diagnosed in 2014 at age 39, I'd been brushed of for years. I'd even stopped complaining to my Dr because he always had a simple reason for my symptoms and I didn't want to Cecil considered a hypercondriac.
I be always been a tired person and my dad would say I'm lazy, my Dr would say its because I have three kids and earning my bachelor's degree in my 30s. Today I go to bed around 10:00, get up with our 12 year old "baby" to be sure she gets ready for school and on the bus in time, then go back to sleep until my husband wakes me up around noon. If I'm not awakened, who knows how long I'll sleep!
Ive had several other symptoms that have come and gone, but some have never left, like trouble word finding, the feeling that I'm on a tilt 'O whirl, saying "yesterday" when I meant to say "tomorrow," 2010 when I mean 2022, April when I mean August, and etc! I insist that I'm right when my husband corrects me (and I later realize I'm wrong), and on and on.
I can relate to everything you say, even though we have our own MS differences.
My doctor says I have Chronic Progressive MS which is essentially SPMS, but you explained quite well that it's because some symptoms never go away. I'd thought it was because my MRIs have been "stable" the shoe time Ive been on Rebif (since February 2016). Plus, I stopped working my 20 hr/week job in September 2015 and can rest/nap whenever I need. And no more stress over simple job tasks I could no longer do.
I love the thought of not giving myself shots 3x weekly, but for now, if it's part of the reason why Ive had no new symptoms and no new lesions on MRI since 2015, I'll keep going. Thank you for comparing MS notes with me! 😘
Darn auto correct! Hope you understand me what with words being added or replaced with the wrong words. Google, you have MS!! 🙉🙊
@@jenniferroshto7377 I've had that happen too, especially now that my fingers are numb and dumb! Thanks for describing your MS. I relate to the "Tilt-a-Whirl" analogy! While I haven't started mixing up words yet, I've found that I sometimes lose my train of thought - nothing serious, but bothersome none the less. I'm glad your DMT seems to be helping you stay stable. MS is such a strange animal; not even our doctors really understand our experience. You clearly haven't let that get you down - I can tell you've kept your sense of humor. Thanks so much for your comments.
I like you 🙂 I was 'diagnosed' at 17 so have had MS about the same amount of time. I am also quite unpleasant, so nice to meet you 😊 🇬🇧
You don't seem unpleasant to me! It's harder to be all sunny and happy on bad-MS days. If others only knew!
@@youandmeandmultiplescleros402 In reality I'm an upbeat lady like yourself, laugh a lot and love my bed 🛌 amongst other things. Thanks for the reply it means a lot 🙂 😊
@@sarahdixon6011 🙃
I am amazed at how comfortable you are. Are you ad libing? Thanks for the depth in your presentation. xx
Thank you, Mona! I do make some notes, but it's mostly ad lib. I more or less have to. My eyes don't like to refocus quickly between notes and screen... :-(
Hello. How old are you? And what DMTs have you taken?
Hi! I'm 62. I was 61 when I made this video, so at this point I've lived with MS for 37 years, since 1985.
@@youandmeandmultiplescleros402 thank you, So does that mean you haven't taken any DMTs?
@@TankoxD I was on Copaxone for 10 years (~2002-2012), but once my diagnosis changed to secondary progressive, my insurance stopped covering it. I haven't been on any DMT since.
@@youandmeandmultiplescleros402 thank you so much
@@TankoxD Thank you for asking! Where are you in the MS saga? Have you had it awhile or are you newly diagnosed?