Last reply 1 month ago
My SPMS

Reading about everybody’s posts n their medications. I av spms and I’m on nothing a part from gabapentin. I’ve been told by professors, doctors and my ms nurse that there isn’t anything for me to help, medication wise. Is anyone else like me?

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stumbler
5 months ago

You’re not alone, @rotherhamdave . 🙁


rolly
5 months ago

same same…


storm
5 months ago

Me too 😒


peterfrancis
5 months ago

I have SPMS too and I also am taking Gabbapentin along with Baclofen.

I was told pretty much the same thing as you rotherhamdave and was not eligible to even think about having infusions as they would end up causing more damage/problems as they would not work well with my Type 1 Diabetes.


doubleo7hud
5 months ago

There is not a miracle cure ether way mate (read up,researched till blue in the face tablets just delay the fecker) but there working on it. There are loads of things we can do to manage our symptoms (should take my own advice tho). We’re all in the same boat matey meds or not, just different stages. I’m gonna be just the same I can feel it coming. Not being negative my heads reet, I’m just on my way it’s only matter of time, pills Are just buying me some more time (hopefully) but I’m not in denial about it, accepted it fast. There also probably doing more harm than good as no one really knows exactly what they do 😂 Cross that bridge when I get there. In the mean time I’m getting the bills paid so my baby’s are happy and cared for and still will do the same when my legs are completely gone if I have to crawl 10 miles to work every morning on me face.


doubleo7hud
5 months ago

Half fecked, fecked or completely fecking fecked I’m focusing on living my life as best as I can.


rainbow
5 months ago

Hey @totherhamdave

How much gabapentin are you taking?


rotherhamdave
5 months ago

1800mg a day. Ms nurse has written to gp to up it to help with my left hand tremors which start up when I’m trying to do things. Eg preparing food or lifting objects


avengr13
1 month ago

Yep, count me in


rotherhamdave
1 month ago

I’ve knocked gabapentin down to 1500mg. I was so tired n sleepy on 2100mg. Not as tired now but still get fatigued when doing stuff at home. But that can’t be helped I guess


rolly
1 month ago

same


nutshell88
1 month ago

Fat-derived stem cells are a safe and feasible treatment strategy for patients with secondary progressive multiple sclerosis, results from a Phase 1/2 clinical trial show. … Because SPMS likely results from neurodegeneration, researchers have become interested in exploring stem cells as a potential
Multiplesclerosisnewstoday.com


lorag
1 month ago

yes I have tried 7 medications over the 20 years, I have had SPMS for nearly 7 years, my nuro suggested I start taking biotin to help with energy and vitamin D5000mg. there is nothing for spms yet but for me I won’t be going on meds because of the way the other meds made me feel puts me off.


stumbler
1 month ago

Here’s a link to the article suggested by @nutshell88 above :-

https://multiplesclerosisnewstoday.com/2018/05/21/adipose-derived-stem-cells-safe-feasible-spms-treatment-phase-1-2-trial/

It’s early days for this one…………..


nutshell88
1 month ago

@stumbler pardon,
I’m not aware of spms or stem cells.
I shouldn’t have interfered.


stumbler
1 month ago

@nutshell88 , you keep on doing what you’re doing.

We all just pass information on in good faith. 😉

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