Unnumbered post 20+years in the game 8 Feb 2020

[RoyceNewton]

I have had ms for over twenty years. Not sure how long exactly, will make an effort and work it out one day, maybe. I have always been told I have the Relapsing-Remitting (RRms) form of the disease. My MRI (Magnetic Resonance Images ) of the disease always show some progression. I have them done annually. I have a record of them in my files, all twenty. I have gotten worse over the years, but not enough to be seriously concerned about. Okay I miss my erections, they always lead to fun and games, but as a grown-up, I can work around that. I have lost nothing that I can not live without.

Again as a grown-up I have found"'OTHER" things to entertain my mind and occupy my many years of life. I was diagnosed at 29 so I have memories, and I have made many more in the last 20+ years. I have travelled and used up several passports. I have seen the southern sky from the Desert at night, I have seen ice calving of fglaciers in AK. I have RRms, my disease has worsened, BUT my life and dreams have not ended. I still play the lottery, I won $4 a few weeks ago, my first big win.

I have followed Swank ms Diet, Keto, Vegetarian. My cholesterol sill sux. I may be chronically disabled, like "YOU" but I still live. I do not expect a cure, if one comes along I feel I would not be eligible anyway so I make the best with what I have. No unreal expectations, no dreams that can never be achieved. Well maybe one or two I still want to go into space.

Royce (the ms writer)

I haveRRms and will have it until the day I day and I think I am comfortable with that, how about you?

[carolek572 CommunityAmbassador]

Not at all comfortable with my fiend, 'ms', however, like you, I have learned to do the things that matter, in spite of 'ms'. Adaptability is key, and a sunny disposition! Keep Smiling, Royce

[RoyceNewton in reply to carolek572]

not comfortable, I undertand, I guess I am just diffewrent, yes' adapt adapt adaptthen adapt some more

[carolek572 CommunityAmbassador in reply to RoyceNewton]

[twooldcrows]

you sound like you have had a wonderful life despite having MS for you have found ways around any thing that was in your way and was very lucky to be able to travel...i think you have done lots of different things in your life and i too have RRms ...things do change ,not to much i can't ride a bike for i want to tip over all the time ...no running but these don't bother me much if i want to ride a bike i could go out to the garage and ride the three wheeled one my husband bought me years ago but i again feel like i will tip over and hard to peddle ...so i walk for a while then the cane or if longer distance it is my scooter ....but other wise life is good ...have memory ,eye sight ,hear and cold things that go on at times but i have learned to work around them ...not to bad but i can do with it ....life is to short to let it stop because of the MS...i love life and love to laugh and watch the kids play and of course the dogs...just keep doing until i can' t and hope they do find a cure for others not to have to go thru what we all have gone thru ...

[RoyceNewton in reply to twooldcrows]

very nice sentiment

[Hidden]

I was diagnosed with RRMS in 2008 initially and after some denial went on Copaxone , then IV steroids for a couple of years. Then I chose not to take any DMT’s for my MRI’s had remain unchanged. Last October dr found a new lesion in my right temporal lobe and now wants me to try a more aggressive DMT since it’s been over 10 years since original diagnosis. His explanation is that because of the time I’ve had the diagnosis it’s now considered SPMS? Does that make sense to you? I think part of the worsening of my symptoms is now a result of stress. I know people that go without dmts and follow a diet and exercise program only, which I have tried to do, treating symptoms only with other meds when needed (like Advil, wellbutrin, tramadol). Are you on a DMT RoyceNewton? I go back to neuro on Tuesday. Have reservations about starting a strong dmt with new side effects. :/ (I researched, bought the book, and wanted to do Terry Wahl’s program but then read somewhere that she also had stem cell treatment.)

[RoyceNewton in reply to Hidden]

I am not your doctor but I will make a couple of statements not ment to upset you but inform you.DMT is meant to slow progression it is not a cure. Take it and slow your progression, how much nob ody can say. Do not take it and the disease progresses at its own rate with no impediments. look at people before DMT. Ask the msaa for a magazine from 30 years ago. Look at the pictures of the people on the cover. Look at one from today. Do you notice the difference? Yes I am on DMT, tecfidera, originally Beta, then Rebif dfor a Month. I never missed a dose regardless of sideeffects or how much fear I have of needles. Yes I have a HUGE phobia of them. An infusion or a TABLET MIGHT BE A GOOD OPTION, but I am sure your Doctor has an idea.

I do not understand the premise behind stem cell treatment. It is not understood what causes the disease so how can they be sure that what they are doing is best for you, and what they are doing is really slowing\stopping the disease. Besides it is expensive and I understand that insurance does not cover it.

[4fishylady in reply to RoyceNewton]

I am glad to read that you, too, are on Tecfidera. I have been for 5 years and have not gotten any worse. People who are afraid to accept what the miracles of modern medicine can do, are in dangerous territory. I take some supplements and eat a very healthy diet for weight control, and to try and keep my cholesterol under control. It's what works for me! Haven't needed a new MRI for a couple of years. My primary issues are occasional "brain fog" and leg weakness that comes and goes. I am blessed and thankful. PTL!

[RoyceNewton in reply to 4fishylady]

I am happy for you, sounds like you are making the best moves that you can. I only do annual MRI's because I am a stickler for annual records. I too have issues with chloesterol

[Dmc039]

I too have had relapsing, remitting ms for at least 20 years. I have done many things no one thought I would. I travel, scuba dive even lived and cruised on a sailboat for 5 years.

2 years ago I asked my doctor about getting a service dog and he suggested I get a scooter. I don’t want a scooter, if I stop moving I will really be handicapped! I got a new doctor and a wonderful service dog, Reagan. He was trained for Balance and mobility aid and is such an amazing tool! We travel together and i don’t have to worry about falling in public. And it has given my husband more freedom.

My advice to anyone just diagnosed, is to keep your dreams. Everyone progresses at different speeds. Don’t let anyone tell you to “give in” to it. Listen to your body, it will tell you when it’s tired. But don’t quit living!

[RoyceNewton in reply to Dmc039]

scuba diving, now that is cool maybe I should put that on my list of things to do

[Hidden in reply to Dmc039]

Are you on a DMT, Dmc.....? If I may be so forward as to ask?

[RoyceNewton in reply to Hidden]

hardly forward, beta then rebif tback to beta and now after years and years tecfideratecfidera

[Dmc039]

Sorry about the double post!

[RoyceNewton in reply to Dmc039]

never a problem Sis

[Hidden]

Thank you for speaking your truth RoyceNewton! I do appreciate it. I will move forward with courage and acceptance as I discuss with my doctor on Tuesday. Huggs

[RoyceNewton in reply to Hidden]

good luck I hope it goes well, remeber the consequences affect you, nobody else