Post 727 ms Month 2021 1 Mar 2021

[RoyceNewton]

G’Day, my beloved ms Family. I will state that I am NOT a medical professional, so I might be wrong. On this, I am NOT WRONG. We all have ms, if You are like me, have Relapsing-Remitting (RRms) get on a medicine soon, no excuses. Ocrevus as I understand it is currently the strongest that “YOU” can take. Seriously if “YOU” know better please share. This is a lifelong illness, it is best for “YOU” to start out STRONG. Remember always it will be “YOU” that suffers in the longterm, not me, not your doctor. Nobody else but “YOU”, and though “YOU” may not feel this way today, “YOU” neither deserve nor should have to suffer this disease.

There will be very difficult days, mostly nights. BUT in all seriousness and honesty, “YOU” can get through this. When Trigeminal Neuralgia first tore through my face, I sometimes thought of giving up. I was always stopped by the thought of how that would affect others. “YOU”’ my real family and my joint dog. Perhaps a quick think about others first might be a good idea. It would at least upset ME if “YOU” were not here, so stay here.

It is ms month, so change all your t-shirts into your ms ones. I think I have four or five and of course I have 3 ms masks. They do make people look twice when I walk around the Ice Hockey arena and run up the steps. I feel it is very good for people to see that ms does not automatically mean a wheelchair or scooter, it may, but it probably will NOT. If it does, give your scooter chair, walker, cane some flair and character. Own your ms, stand tall and face it. accept it and adapt to it as “YOU” have to. The aim is always to have as good, happy and worthwhile life as “YOU” possibly can. Teach this to your children, your family and others.

“YOU” have something very valuable now.' “YOU” have strength, resilience and tenacity. A will to carry on. Pass this along, let it be your life purpose. Let it be what gets “YOU” out of bed, and makes "YOU" take that first step towards your day. There are a thousand reasons why, make one your own and make it get “YOU” through the day. Never, ever give up "YOU" on yourself. “YOU” my ms Sister or Brother are so much more than that. Do not forget it, believe it. This life is yours to live to its fullest. Go ahead, live it.

Royce (your ms Writer and Brother)

it is your life, live it your best, today and every day

[twooldcrows]

you are such a great and wonderful person , i am so glad to be able to read all that you post ...really is the best to bring all of us into the light of the day and to keep on keeping on for we do still have a great life ahead of us ...thank you so much ...love and much happiness to yours and others to stay positive ....

[Mermaidia11]

Are u on commission?!

It’s really not the only way in my humble view and taking a dmd could actually rob you of the best years of your life.

Progressive and incurable is just that

[RoyceNewton in reply to Mermaidia11]

are u asking if I am on a commission? From whom do you think? Actually, if you are asking that of ma, NO. Why exactly would you think such a thing? Taking a Disease-Modifying Therapy ribbing you of your best years, what a strange concept, I assume that you have not had Relapsing-Remitting ms for very long to say and think such a strange thing.

NO. I am not on a commission and 20+ years Relapsing-Remitting ms.

[Ali_H]

Hi,

I read this with interest as my mum has RRms - she’s now 84 and still mobile. She has her lapses and needs to, as always, rest and take extra personal care at these times...... how she raised us 6 kids and did the self care etc years ago I don’t know but she did and she’s never taken anything for her RRms.

I guess what I’m saying is different med approaches work for different people and I’m not sure that it’s appropriate for non-medically trained individuals to advocate a medical regime beyond relaying what has worked for themselves and how it worked.

All the best

Ali

[RoyceNewton in reply to Ali_H]

Good point, BUT if the aim (which it most certainly is) is to help a lost lonely individual what do you advise them except to follow a DMT. Any DMT, not just one. Is it conscionable not to give the recommendation, knowing what the outcome in 10 15 20 years is likely to be? I do not feel it is.

[Midgey_Midge06 in reply to RoyceNewton]

True point. I am not on a DMT and know that in the future i may regret it. But that will be my bad. As a newbie i was so lost thinking about the MS drugs and found forums the best place to learn from actual people living with MS. I did try several and felt it wasnt for me. I like my hair too much! But thats my decision. I am glad you are here to talk about it with others that probably have so many questions.

I love your posts and i so wish we had got to meet in person so i cud give you and “she that shall not be named” huge hugs. Stupid covid messed that up.

[RoyceNewton in reply to Midgey_Midge06]

it will not last forever my sister

[Mermaidia11]

Au contraire - you assume wrong amigo

I’ve had ms since I was 20, had a nasty attack in university and then another in 2000 when I was formally diagnosed at 26. So had RR since then and it turned progressive in 2013. I wanted a family and a life and wasn’t ready to be a professional patient; and felt that it had taken me so long to get well again, that I didn’t want to compromise that by taking toxic drugs.

In those days they didn’t shove DMDS down your throat and my neurologists advice was swerve the dirty drugs, have your baby and have a life for as long as you can.

So I did. I had a very successful career as a lawyer, set up my own business, made a lot of money, went round the world and came back from the Caribbean pregnant. Twice.

Yes it was exhausting, painful and blurry and I had to suck it up a lot - but it was worth it.

Yes secondary progressive is a total bitch but that’s the progression of the disease- you start off cis then it goes to RR then progressive after 10-15 years.

You seem to have bucked the trend, because you have not entered the progressive phase and have had your dmd a long time.

The one they wanted me to take has now been withdrawn for the amount of people who died on it.

It seems they prescribe first and monitor safety after. I’m not ever gonna be a lab rat for them.

I have a plethora of issues now and need help, but despite not being able to walk or drive anymore, I still live independently, not reliant on a partner and my children regularly visit

I’d be dead or very ill and childless if I’d have proceeded with the DMD and would not have wonderful memories to fall back on

I’m just offering a different perspective- i think it’s important to live not just be alive and newly diagnosed people need all perspectives in my humble opinion

I’m sorry if I offended you asking if you were on commission but you wouldn’t be the first and your daily beseeching and advocacy of taking one suggested to me that you may not be entirely independent- but your motivation is to help, I see that now and therefore I send hugs and apologies your way

✨💕💜🦄💜💕✨

[falalalala in reply to Mermaidia11]

"It seems they prescribe first and monitor safety after. I’m not ever gonna be a lab rat for them."

That sums up my reasons for not taking drugs for MS.

[Mermaidia11]

Thank you darling lady

I am glad I am not the only one who feels the same

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