Any medical professional

[RoyceNewton]

Any medical professional who does not recommend “YOU” as a person with Relapsing Remitting ms (RRms) start on Disease Modifying therapy (DMT) immediately does not deserve your time or your money. “YOU” are paying for their assistance advice knowledge aren’t “YOU” use it. If “YOU” are getting free service, I would like to know. “YOU” my sibling have ms, not the doctor. in forty years time he\she will be nicely retired in their nice big house with all it’d accessories, “YOU” will be disabled to some extent, wishing that “YOU” had of insisted on taking some form of DMT. Regret can be a great teacher. Do not start on the oldest least effective medicine, go for the newer strongest DMT that “YOU” can tolerate. If necessary change down later but start at the top first. Relapse rate is a good measure if “YOU” are not sure how to read the information that is supplied to “YOU”. With these medicines there are side effects and they are not a cure, so moderate your expectations.

“DO SOMETHING TO HELP YOURSELF TODAY NOT LATER”

Crying and denial are okay, but “YOU” are sick so do something to slow yourself getting worse fast. This condition is progressive. “YOU” like me will get worse. I am not looking forward to it but I accept that this is my fate. I like “YOU” should do everything that we can to slow that descent. Climbing up out of the ms pit is a challenge. Perhaps “YOU” are up to it. I know it took me along time to find some stability on my fall, but I can live here I have accepted that, I am at ease with my condition.

At first it is a fight a struggle a constant battle but I for one did not think I could do that for a lifetime. What I can do is manage my condition. Take my DMT wear protective underwear exercise eat right get some philosophical outlooks into my life. Learn and adapt my new lifestyle and way of thinking. Set myself a very long term goal and start moving toward it. This “IS” my life and I am going to live it to the best of my ability. Here is an offer, why don’t “YOU” try it as well. It is not easy, this is not a two aspirin and a nap type of a disease. It is lifelong and it can be hard but is entirely doable. It just takes “YOU” making a decision to start and keep at it. So if somebody tells “YOU” to just wait and see, they are doing “YOU” no favours. Just making that climb out of the ms pit harder for “YOU” not them, “YOU” This is your condition and these are your decisions make smart ones and have the best life that “YOU” possibly can.

Royce

RRms is very doable it just takes some calm thing and a good bit of determination

[carolek572 CommunityAmbassador]

Good solid advice, Royce

[RoyceNewton in reply to carolek572]

thanks

[goatgal]

Speaking from my experience, let me add: proceed with caution. Since those over 65 and newly diagnosed may respond to DMTs in unanticipated ways, monitor any treatment course carefully and be prepared to track the side effects. As our bodies age, they process drugs in ways very different from the populations selected for clinical trials.

[RoyceNewton in reply to goatgal]

Thank you, something I had not encountered, appreciate the advice

[goatgal in reply to RoyceNewton]

I need to clarify my previous response: you are the guru for the newly diagnosed: I wish I had read your posts when I was newly diagnosed and suffering from lack of information. I meant my sentence to be: those newly diagnosed at age 65 and older respond differently to DMTs. I have been seen by seven different neurologists since being diagnosed at age 70. All of them have said that they do not prescribe DMTs for those in my age bracket. Asked to explain, the responses have been: DMTs have not been drug trialed on those 65 and older, older patients respond differently than those younger to all DMTs, even those who began DMTs when they were young often find them less effective as they age. It seems to me that those in my demographic with aggressive forms of MS need to strongly advocate for themselves, seeking out neurologists who may be willing to prescribe DMTs in conjunction with careful monitoring and adjustments to dosing amounts, frequency, and so forth.

[RoyceNewton in reply to goatgal]

yes, that does sound sensible. I have to say on a personal level, why bother. DMT is a long term medicine with side effects. I am not sure that I would endure side effects at an advanced age. It is not going to go away so why not just live as best as I can? I am not advocating that you do nothing, your treatment choice is yours. In the same breath I might not take cancer treatment at an old age. I have lived a reasonable life, and done a few things that I wanted to do, I might be comfortable with being a little fatalistic, but I am only 50 so we shall see what I say in 20 years

[goatgal in reply to RoyceNewton]

I am fortunate that my MS has been more or less stable since I was diagnosed. I take no DMTs, but all my symptoms have continued. I am aware that I am slowly declining (heat intolerance, gait, balance, spasms, stiffness, sudden weaknesses, etc.); maybe it is due to MS, maybe it is due to age. I have never expected a life without discomfort, pain, or difficulties of many sorts. I am generally optimistic, glad for each new day, and appreciative of the loveliness of the world and its many people.

[Kompany in reply to goatgal]

I’ve tried multiple DMTs through my 15+ yrs of Dx & after having a Dr who never listened to me and insisted on me trying new therapies (which I refused) & & since found a Dr who LISTENS 😁 & it’s been been great since ((w/o DMT’s) I’m walking without assistance now 😁

[goatgal in reply to Kompany]

Indeed, the ability to establish a respectful relationship with a neurologist is critically important. It may be difficult, however, for those of us who live in areas not well supplied with specialists.

[Kompany in reply to goatgal]

I hear she is a rarity. I’m grateful that my friend spoke up & was willing to share her.

[RoyceNewton in reply to Kompany]

You are lucky and that is good