unnumbered post u have ms 19 Masr ... - My MSAA Community

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unnumbered post u have ms 19 Masr 2021

RoyceNewton profile image
18 Replies

"YOU" have relapsing-Remitting ms (RRms, so what? "YOU can do this. Do not believe me. Believe "YOU. "YOU" have got this. "YOU" can do this, do not give up on yourself. Take the first step. "YOU" have this, I am impressed, sleep well and have a good day.

Royce (your ms writer and Brother)

Belive me and believe in yourself

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RoyceNewton profile image
RoyceNewton
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18 Replies
Mermaidia11 profile image
Mermaidia11

Yeah I could do it when I was relapsing /remitting-but now that it it has progressed to the secondary progressive stage (because we all become progressive eventually) it is very hard indeed and no amount of willpower/positive vibes will overcome it

Just sayin

RoyceNewton profile image
RoyceNewton in reply to Mermaidia11

NO, I believe we ALL do not become secondary progressive, you can die with it always being Relapsing-remitting, at least that is my plan

kdali profile image
kdali in reply to Mermaidia11

I’m always curious about secondary, if you care to answer I’d like to know if you have been on medication and/or PT?

RoyceNewton profile image
RoyceNewton in reply to kdali

Medication, non-stop since I could get It. PT no, I occasionally have somebody show me how to use a cane, but it never sticks so I do not use one. I am Relapsing-Remitting for the last 20+ years, so I know nothing useful about Secondary Progressive. Your best bet I would think is to talk to your doctor. Does that answer your question? If no, feel free to ask again.

kdali profile image
kdali in reply to RoyceNewton

Ty Royce! I was replying to Mermaid about the secondary part.

Sandydemop profile image
Sandydemop in reply to kdali

I thought i was in secondary progressive for the last year or two. But as I have shared extensively (maybe TMI) that i am in relapse now. I have had three courses of oral steroids over the last few years so i guess those were for relapses although it wasn't sudden. Very gradual difficulty walking and bladder and cog fog. So can you relapse with secondary? good question. Not sure.

RoyceNewton profile image
RoyceNewton in reply to Sandydemop

I am not sure either, I hate to say it your Doc may be the answer

kdali profile image
kdali in reply to Sandydemop

You can have relapses while transitioning into secondary. I’m glad you shared all about it, how are you feeling today?

Sandydemop profile image
Sandydemop in reply to kdali

thanks kdali I have been on a rampage of sharing. You might get sick of me. However I'm feeling much better today. I over did it yesterday but got a good amount of rest last night. Every day is different. Today i feel Grateful, not sad so it's a good day.

kdali profile image
kdali in reply to Sandydemop

Vent away! Yay for feeling better!! Everyday really is a crap shoot and I guess we should not be surprised, but I’d like some written notice of when it’s going to hit the fan 🤣 I’m really glad to hear that and hope the good continues 🎉🙏

Sandydemop profile image
Sandydemop in reply to kdali

so if you had notice for the bad days, would you show up for them? I don't like surprises myself. Something to get used to. When do you get used to it?

kdali profile image
kdali in reply to Sandydemop

Hah, I would try to call in sick 🤣 I would have my things in order so I would sleep, like no appointments and asking for more help for the kids. I don’t know, you know some people only have 2 relapses their whole lives 🤷‍♀️ I’m less upset about it because I’ve been through a worse one, but also more upset because I’m questioning my therapy and care, which I think is probably normal to do.

Sandydemop profile image
Sandydemop in reply to kdali

of course. we don't know the path not taken. Lots of curiosity about that. we all do. well most i suppose.

Sandydemop profile image
Sandydemop in reply to kdali

and thanks. I don't want you all to get sick of me. :)

kdali profile image
kdali in reply to Sandydemop

You’re welcome! I don’t think that’s likely here, no worries. Some of your posts and comments have been thoughts in my head this past week. I watched a video recently that was like roller coaster of emotions, but validated some of my concerns about progression, targeted therapy, monitoring...and cheered at the lack of rehab in studies being mentioned for once. I won’t babble on, but here it is, you may be interested: youtu.be/U38RqkSUYvI

Sandydemop profile image
Sandydemop in reply to kdali

that presentation was so incredibly helpful and validating. I agree. Who cares if there is a new or bigger lesion? it's about function!!

twooldcrows profile image
twooldcrows

well said now to convince them ...yeah..gogoogogogogoggooggoo

kycmary profile image
kycmary

Another good one Royce thanks!

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