Does it ever...

[Sggmcswain]

Get better or always worse

[melack01]

Sggmcswain I know you have a lot going on right now and things are looking dismal. I am fairly new to MS so I really don't have that answer. But I have hope that it can. I am praying for you and sending a big huge hug.

[Lisacpa]

I’ve had MS for a long time (Dx in 1991). Your question kind of depends on the context. But even though I’m considered SP now, exercise definitely makes things better for me. A LOT better...are you exercising? Having a relapse?

[Sggmcswain in reply to Lisacpa]

In the hospital

[Sggmcswain in reply to Lisacpa]

I'm working - harder than you before

[Sggmcswain in reply to Lisacpa]

I guess the best thing to say I Am doing more.

[dianekjs]

Sggmcswain , I'm so sorry you are having such a rough time lately. I have often wondered the same thing over these past 2+ years while my health and function steadily deteriorated, but almost 5 months after starting Ocrevus infusions, my MS symptoms are, overall, getting BETTER. Not gone by any means, but definitely improving. You're still early in the process to be noticing much from O yet, but I hope with all my heart that given a little more time you will begin noticing benefits too. Keep the faith and know that you're not alone. 😘🙏🏻

[MarkUpnorth]

It can get better, or worse, BUT IT'S UP TO YOU! May not seem like it, but with a whole lot of dedication to fighting this disease, AND WITH A POSITIVE OUTLOOK ALWAYS, and that's the hardest part at times, you can get better. Not saying you can be "perfect" again, but I learned this on my diagnosis stay in the hospital while my neurologist was trying to restart my immune system because of optic neuritis, sending me to a sterile room while he did so. My bed partner just had quadruple bypass surgery, had a massive infection preventing them from closing his chest back up, covered only with sheets! Lesson: "It can always be worse, don't feel sorry for yourself". We both walked out of there, eventually, but that was glued to my mind, from day 1! Then years of fighting via everything I could give it, always. All the new DMT's (back in the days of the ABC drug options only, then came Rebif...) Put up with flue like symptoms for years. On Rebif, about the time the chills and shakes stopped, I had a few hours till it was injection time again, and more fever, chills, shakes....he-double toothpicks for years, but never gave up. Eventually got off all DMT's at the recommendation of my neurologists, in short, was better for a bit, then went essentially comatose! For years, but still fighting. Could not even watch tv if I ate anything. One egg, no toast or potatoes, back to la-la land for the day. Day after day. Then I slowly over years got relief by holding back that place I went to everyday by living on a diet juicing. My $30 juicer got more miles than my cars, the one I had at the time had 280K miles, and like the juicer, just kept on going, kind of like me.

Graduated from juicing to Vita mixing with time, eventually careful healthy eating eased back in, following somewhat closely a Whal's diet, but most importantly, eating essentially all fruits and veggies with far eastern portions (very small) of lean meats, fish.

I'm on no medication these days, other than Cannabis for the evening pain, burning feet which I wanted to cut off for years, keeping me sleep deprived and fatigued. No, life's not "perfect" by any means, but it can get much, much better. So what if my brain now keeps track of every bathroom within the shortest distance without thinking about it anymore. And I force myself to get 10K steps every day, even though I have to use a cane for balance. I can do twice that, till my shoulder gives out, from the cane, but that's okay. M.S. has given me a new interest in life. Healthy eating and cooking. It may take up my whole day, whereas someone without m.s. could do the same in a small fraction of what it takes me...

I even got on a bike and rode 19 miles down the Virginia Creeper Trail a few months ago. Okay, I started on an adult tricycle, thinking a recumbent tryke the latter of which is stable, the former, not-so-much. Gently crashed many times during the first 10th of the trail using my 3 wheeled bike, till I finally switched with my friend who rode the 3 wheeled bikes for 20+ years with 50# of tools racing from site to site on a GM production line keeping the line running. Remember, 2 wheels in front, stable. 2 wheels in back, not so much. There was not way off that mountain but down. I forced myself to ride a 2 wheeler one more time. But, never again! I promised God if I made it off the mountain, and someone could pry my hands from the handlebars.... But, I gave up attempting to ride a bike because of balance years ago. I rode down a mountain! You can do it too!

Yes, it gets better. It may get worse. BUT NEVER FORGET: THERE ARE MANY PEOPLE WHO HAVE IT FAR WORSE THAN WHAT YOU HAVE, EVEN THOUGH YOU CANNOT IMAGINE, DON'T FEEL SORRY FOR YOURSELF, AND NEVER GIVE UP! Like the picture which I posted for years in my office: A bird the size of Chicago's skyscrapers standing amongst them, with a frog in it's beak, and the frog has it's hands around the bird's neck! Never give up. That picture now resides on my old office cork board, proudly displayed in my basement! AND I'm still fighting!

[Sggmcswain]

Thank you so much do this - I am in a "nursing and recovery center" in North Georgia. My doctor along with my sister said I basically have given up. I am too young and need to learn to fight again. Your words have been a great helper and make me use my thoughts better!

Thank you again!