Dx’d with RRMS in January of ‘15 and over the course of that next 12 months it was changed to PPMS. I’ve tried several rounds of Solu-Medrol, in the beginning few months, 11 rounds of Tysabri, but taken off due to being JC+, Copaxone for another year and have been on Ocrevus the balance of time. Unfortunately I cannot say that I’ve noticed a slow in my progression...but who really knows.
Overall I am an extremely upbeat and positive person and try to find the best in everything...most of the time. Grateful to have a very supportive family, consisting of a senior in college (daughter) and a senior in high school (son). Please feel free to drop a note to chat, ask a question or just want to yell at someone!
Morning Jeff, I too have PPMS but I live in the U.K. where treatment is not so freely available. I am 63 years old and for the first time since my dx in 2010, I have been offered Ocrevus. I have refused it as breast cancer is very prevalent in my immediate family. I hope that you see some signs of improvement or at least let’s hope and pray that it stops any more progression. Blessings Jimeka 🦋
Hi Jeff, I was diagnosed with PPMS July 31st this year and it has been a real roller coaster ride. I am on Ocrevus also and I am waiting for the progression to slow down at least. It can be very hard to deal with everyday. No stopping with PPMS. 🤪
Hello there Cutefreckles72 and thank you for your message! Sorry to hear of your recent diagnosis, and agree with the roller coaster ride! No ma’am there’s no stopping the progression however, and remember, we get to choose how much it affects our spirits.
As I’m sure you’ve read & learned, aside from the cram sessions trying to study & understand what the heck is going on inside your body...turning to others to hear and understand their “ride” has proven to be very valuable, for me anyways... so, I’m a new fan of yours and I’m here to talk about anything you may want. Hope you’re off to a great day!
Welcome Hidden for your lovely intro and post. I too, was diagnosed with RRms, and re-diagnosed to PPms. It really makes no difference to me, as it's all 'ms' to me. Anyway, I was on Copaxone, then Tecfidera, and now Ocrevus. It is doing its intended job of slowing the progression, but I am still ever so slowly declining in my abilities. I look forward to hear more from you, so welcome to this forum!
Hi Jeff I’m also in the UK and I’m RRMS but u never know I might slide into SPMS which would not be brill. I’ve been to see my neurologist last week who asked why I have an elbow crutch now, he seemed a bit surprised! The crutch helps my balance outside - big bloody whoop! Nice to hear from you and I’m saying HOWDY! 😃😃😃😃❤️❤️😎😎😎😎😎✋🏼✋🏼🤚🏼🤚🏼🤚🏼🤚🏼🤚🏼✋🏼
I appreciate the reply and love the positive vibes you send. I also agree with the elbow crutch...mine are very helpful in every day life, and assisting in helping me get up after falls 😉
HOWDY back to you in the UK and I hope you’re having a wonderful day!
I was diagnosed with RRMS in 2014 and had "relapses" on Gilenya and Rebif so went on 0crevus clinical trial in 2016 and have been on it since then. My new neurologist (two years new anyway) thinks I really have ppms but hasn't officially changed my diagnosis in my chart which I am happy about.
My symptoms are mostly sensory that never improved. My motor symptoms have progressed over the years without any sudden changes which also points to ppms. I wish there was a definitive test to know for sure but I guess with Ocrevus being approved for ppms it doesn't matter too much.
I have a 20 year old son in the Army.
I try to stay positive and am successful most days.
Thank you for the message, and yes ma’am sounds like we do share many commonalities!
Sounds like you are on the right track with the Ocrevus and a good doctor. I hope you find some relief from this ugly disease soon and encourage to keep the positive thoughts and a permanent smile!
Now more importantly...a Big Thank You to you for raising such a fine young man...and a Big Thank You to him for his service!!!
Looking forward to seeing you more on here and wishing you an awesome day.
Welcome, Jeff ! I'm in NC, started out with RRMS in 1983, when there was nothing to take for it, and it became SPMS about 15 years ago. I like your attitude
and I agree that Life is what we make it. A sense of humor helps,
especially when you live with a disease that may cause some random part of your body to twitch, spasm, tremor.....have a wonderful and blessed day!
You’re an OG when it comes to this disease and I’m sure we can all learn much from you.
Sense of humor is a must...I really enjoy the look of “watch out for the drunk guy” while walking around or others watching my lips, while I talk, to help them better understand the slurred speech.
I’ve learned to actually laugh at myself more and tell myself often, “it could always be worse”.
Hope you too have a wonderful and blessed day out there in NC!
Morning Jeff! I have SPMS and CIDP, however, the symptomology sounds very similar. Positivity is a indispensable breastplate that will serve you well as time goes on.
Hello Jeff, nice to meet you! Wow your family sounds amazing, I have RRMS receive my dx in 2008, currently on Copaxone. I had my share of Solu -Medrol rounds (yuck); last one to May 27th 2017. We're all here to support each other with respect and care.
Hello there NeeC, nice to meet you as well! I share your feelings on the Solution-Medrol infusions and I have actually refused them after my first year. I understand how important & helpful they are for the majority...but they seemed to wipe me out and make symptoms worse.
What’s gotten to be funny is watching a guy @ 6’5” trying to run when any medical doctors try to suggest another round!
One last note Jeff, how about over the duration of my MS journey I've had 18 of them with my hospital stays averaging 4 -5 days. As I mentionted 2017 and counting. Sundays and church are my best days to dance for that very reason!
Hi Jeff and welcome. Sorry to meet under these circumstances but here we are. Your story sounds like mine. Ocrevus didn’t seem to slow progression much so I am waiting to start on Mayzent. I too have a wonderfully supportive family and consider myself very blessed. This site is amazing and you will find it feeds your spirit and makes you laugh too! My belief is we are all where we are meant to be so welcome and God bless
Thank you so much DisneyQueen, it’s very nice to meet you too!
Mayzent...I’ve never heard of that and now you’ve sparked my interest to look into it. Actually have an appointment with a very well known MS specialist (here in SoCal) on the 14th of next month. I’m cheating on my specialist of 2 years to continue to check all opinions and whomever I believe will be the most aggressive with my disease. Getting awfully frustrated with the scripted follow ups every 6 months talking to the side of my doctor’s head while he types everything on the computer...
Thank you again and I hope you’re having a great day!
Hi! I was told I transitioned from RRMS to PPMS, "maybe". That was a while ago, My Neuro's didn't want to label me with PPMS, because, at least at the time, there weren't DMT's for PPMS. Obviously, times have changed, but so have I! Over 5 years ago, I suffered my last of many, many, many relapses. I was told to stop the DMT's, after several YEARS of flue like symptoms from the DMT's. I did, and I went comatose. Okay, not technically so, but with brain fog so bad,,,, well I might as well have been. To fatigued to do anything, too "stupid" to even watch TV. I graduated college, and was running (2) companies as C.E.O. of both, after giving up my Corporate USA Management in Mexico. But, I didn't give up, and you and everyone else shouldn't too. The Dr. Terry Whals story sent me in the right direction. That and I found that if I didn't eat, anything, I didn't go stupid everyday. Till I ate. So I juiced fruits and veggies as my sole subsistence, till evening, when I was willing to go into La La Land for the rest of the day. I then progressed to vita-mixing my fruits and veggies, to get more fiber. Then slowly transitioned to the Whal's idea, of avoiding many foods, sticking to what, primarily fruits and veggies adding in lean meats, fish... What I found was more than eliminating say dairy....eliminating processed foods was the real key to living. To this day, if it contains something I don't know as natural, especially if I can't even pronounce it, and I've had many years of chemistry as basis for my engineering background. Well, I avoid it. Eating healthy, I can do what I lost many years ago. We just visited the old college my wife and I went to, and met at, and we walked the whole thing. 9.8 miles. Not a record. Not even a difficult task. Yeah, back from the days I had to push to get 1500 steps with my cane. I'm again cane-less. It now hangs on the wall in my basement like a trophy. I'm over it. And so much more. You can too. My Neuro told me that he sees others doing the same! But from what I heard from others, there is some talk about I seem to have nailed it with the healthy eating. I learned to cook. You can too. Don't need a cook book, it's all on line. Maybe just get one of the Whal's books for encouragement and a bit of education. But, if you eat unprocessed, without artificial chemist designed chemicals, you'd be on the right tract. The rest...do what you feel is right. Okay, I still ride a 3 wheeled bike, (a recumbent trike), but I might be able to do a 2 wheeler again someday? Yeah, nah, the trikes are way too comfortable!
P.S.: Sorry, our first meeting, but no time to waste! Yes, I'm a bit.... But after coming back from the dead, there's no stopping me. Everyone with M.S. has to know!
I too have made major adjustments to my diet which certainly have helped with my overall health, however I still have issues with my gait & certain levels of fatigue. My wife has become such a strict person on what goes in our refrigerator & cupboard and really enjoys cooking with only organic foods. Works for us but I’m also careful with how much I preach it because it is so much more expensive than the traditional quick foods our society has become accustomed to - Not a luxury everyone has.
Great to hear you’re having success on your path and I would really encourage you stay the course.
The only time I do organic, is when it is the same cost, or pennies more. For the rest, I scrub, and scrub, and scrub. I have a set of brushes... I don't rely on organic so much, but what I Do, Is Skip the Processed Foods. Even if it means doing something from scratch when it used to be simple. From the guy whose companies made their living off of food processors? If it's made from scratch, that's all you need. Good Luck. Keep it up! It makes a world of difference. Yes, it's hard to do. BUT worth it!
You can get a small, temporary boost from fatigue, simply pop a few sublingual vit B's. Good for a couple hours after a half hour or so. Or an energizing Sativa!!! Yeah, that works better!
Gait problems, never had that? Just dragged a leg for years.
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