Does anyone else here have Secondary Progressive MS? My neurologist says no more drugs for me except feel good drugs like neurotin and baclofin etc.
SPMS: Does anyone else here have Secondary... - My MSAA Community
SPMS
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SjWilcox, A very warm welcome Home, to our crazy,but supportive + encouraging Family of MSer Warriorz!👍❤💚💜💙💛 Here, U can laugh, Cry, vent, Rant, your among family❤💚👍😍 & here your family too!👍😃💙 If u have Kindle, get a book by Ann Boroch. "Healing M.S." it's all about how she reversed her M.S. & awesome recipes & facts+Truths about how an overgrowth of intestinal-Fungai pplay an imprtant role of our Progression of M.S.ter!😡 Our guts & our brains are interlinked & when our guts are clogged, then our precious brains get clogged up w/Many Lesions & scars (M.S.) & all ofour problems we have now...👍I highly recommend th@ book for ya! & again welcome!💗---Jazmine🌹Rose💜
We have many here with SPMS, so I hope they will speak up. There is a new post about a new treatment that is nearing approval for targeting SPMS. We are all hopeful that it is effective and gets approved.
SjWilcox, it's Fancy. To that I say, "Bull Beans!" If you catch my drift. And I also want to tell you to find a new neurologist because SPMS is not a death sentence. I can't do anything else to help you sentence. There are new drugs constantly being approved and you need to find an MS specialist neurologist Who Won't Give Up On You! If you have trouble doing or finding the right neurologist call The National MS Society at 1-800-fightms and they'll direct you to a neurologist that's part of their team that they call their Partners In Hope. These Neurologist will never give up on you and will continue to try therapies and fight for you no matter what.
I know I also have SPMS and was in the exact same spot you are several years ago, when my then neurologist told me the exact same thing. It felt like a death sentence and I thought he wanted me just to roll over and stop fighting. I wound up bawling my eyes out for about 2 weeks then I picked myself up off the floor and I started making phone calls. I had worked with the National MS Society for several years and I called them seeking answers and they sent me to this awesome neurologist group that was part of their Partners in Hope program. I have never look back and never ever missed my.old old neurologist who I then thought was God like. I've come to realize that he wasn't the least bit up on the current Therapies. I gave him the new nickname of "Doctor Death". I have to admit that was kind of harsh but apropos nonetheless.
So don't give up and it is always okay to seek a second opinion because you are the best advocate of your own health. Give the National MS Society a call, you'll be glad you did. Fancy.
The more recent theories put MS on a continuum rather than discrete compartments. So there may still be MRI undetected disease activity and inflammation in “spms “ and DMTs may still be beneficial. At least that’s my hope🤷♀️
I do.