Post 608 Planning Planning Planning 28 Feb 2020

[RoyceNewton]

I am sorry, “YOU” have just been Diagnosed (Dx’d) with Relapsing-Remitting ms (RRms). I am not your medical professional, so I can not give “YOU” all the answers that “YOU” need right now, but I will give “YOU” a few guidelines that might help “YOU”.

Start Planning. What do “YOU” want and how are “YOU” going to get it? A little reality here, nobody knows how “YOU” got ms, how it is going to progress and how to get rid of it, which Disease Modifying Therapy(DMT) to take which not to take. Perhaps I can enlighten “YOU” a little. Do you remember, when “YOU” were 6 7 or 8 your Mother told “YOU” not to eat that cake so fast and “YOU” did anyway. This is the result, “YOU” have RRms now. Pretty silly is it not? Yes, that is most of the theories around the place, that silly or even sillier. “YOU” have it because and no other reason,BECAUSE. It is fun to ponder why, to search, but do not make it your reason for getting out of bed. My ms Sibling “YOU” will only be disappointed and we do not want that.

Now for your DMT. In this “YOU” are the boss, actually the insurance company is but we will ignore that. First off, these medicines involve needles, or infusion by needle. There are a few out there that are tablets, one of which has a nasty side effect, death by PML. Do your research “YOU” will work out which one it is and your chances of getting PML. As I said I am not your doctor so it is up to “YOU” to do your research. In your research “YOU” will find one DMT that is stronger than the others, it involves an infusion I believe. TAKE IT. It has some side effects, from what I am told they are bearable. All of the DMT’s have side effects. That is an issue with all medicine, not taking them means disability at an increased speed. These medicines SLOW down disease progression, nothing STOPS(cures) it. ms is with “YOU” for life.

Read that again. Now we are back to planning. Make yourself a plan. make it as detailed as “YOU” like. Now erase it and do it again. erase it again and repeat. Do it a few more times. Welcome to your life with RRms, it changes and it changes whenever it wants to. Get used to this frustration it is the nature of our lives now. Nothing can be done about that, merely accept it and move forward. I do not know now many times I have restarted my life and I have only been on this ms journey for 20 or so year. The one constant that I have is that I planned to bend with this disease. Do what has to be done to give myself the absolute best life possible. Unplanned for things can and do happen, but I will persevere through them. I will grit my teeth, cry at my losses. Pull my shoulders back, look straight ahead and keep moving forward with my ms life. My plan was whatever it took, no matter how long it takes I was not going to let myself, completely loose to this illness. My hopes and dreams are fluid and change as circumstances dictate but I am still me.

I think when “YOU” brush away your tears that “YOU” might imagine that future for “YOU”, and if “YOU” can imagine it why do “YOU” not start working towards it?

Royce (the ms writer)

Your future is yours, make it as glorious as “YOU” want it to be

[Hidden]

Ok, are you having a bad day? I am here to listen, if you wanna chat. You usually sound upbeat. I understand bad days.

Prayers and understanding for you.

[RoyceNewton in reply to Hidden]

Thanks, no just a lack of sleep, I should have been more careful with that post I guess, sorry

[Hidden in reply to RoyceNewton]

Don"t need to be sorry

[Sweetheartonvdayl]

Hi

I was dx with MS @ age 27. Now I'm 51& probably been on every dmt out there

For me, tysabri ( which is the most powerful drug that helped me) never had a relapse for 7yrs,until I came came up with PML antibodies,so I was taken off that dmt& placed on tecfidera( which also can cause PML! Now my wbc's are being closely being monitored.

The last drug for me is ocrevus. If that doesn't work, then I convert to PPMS.

It's been one heck of "a ride"

God bless❤

[RoyceNewton in reply to Sweetheartonvdayl]

Tecfidera, PML have to look into that, heck of a ride now that is an understatement

[Barb_28]

Marvelous perspective. Thank you.

[carolek572 CommunityAmbassador]

Yes, you can plan all you want, but these days, it seems like the insurance company would like to hold all the cards. Do not let them. Good post, Royce, and I agree, you need to plan for every outcome.

[sashaming1]

Yep, work with your Neurologist and pick out a DMT. He or she may have some insight about various DMTs' pros and cons for you. But, its your decision which one to take.

[JTZES]

I did not see the original lost that you were responding to but I'm glad you brought up PML. You need to advise them of the JVC Virus and they need to be tested for it before they choose a DMT.

My first Neurologist was a top 20 MS doctor in the country and never tested me for that. Most DMT'S can cause PML it's the % of chance of getting it that makes the difference. Your post are always detailed and honest but when you bring up PML you need to mention the JVC virus blood test.

Thanks for making newly diagnosed aware of the facts.

[Sweetheartonvdayl in reply to JTZES]

Hi

Thank you for pointing that out!!

I always forget that a lot of peopl explainh n e don't have the facts.

I mean " newly diagnosed"

I'll make sure that i ex]pain myself , in the future.

God bless.

Lisa❤

[twooldcrows]

love it ,it says it all but nice for it is scary at first to realize you have it and if and what is going to happen ,,,,sure wish i could of read this when i heard that news back in 2004 and i am still going strong and yes i have had a couple set backs but i just get back up and keep on keeping on...i know probably sounds strange but ha we are all in this together and we all face it differently so glad to see or hear from a newby on here....take care and enjoy the new journey of your life and yes it can be done ...love and much happiness ...