Last reply 1 year ago
Which bloody drugs ??:)

Hi guys,

Hope your all doing good:)

So I’m 36,have a beautiful 20 month baby girl & also the delight of RRMS!!

I was diagnosed 3 years ago, was about to go on drugs then found out I was preggers so didn’t!
I’ve been seeing s naturopathy doctor, healthy diet and a load of suppliememts etc!

I first had body paralise whrrr I woke up completely numb one side, gen optic neauritous after baby then nothing at all for 7 months after the birth!

I was all
Good untill sept last year when I think I woke up with the ms hug… I can only describe it as a snake was wrapped around my upper body and wouldn’t let go ……I had a week of ms steroids that done nothing and have been on gaberprentin and pregabaline since!! Had physio,massages,do swimming etc ! The hug has more of less home but The arms anc hands are still so numb, pins and needlely painful …that hasn’t lifted !! I can’t write properly as I have no coordination in my hands anc forget doing a button up lol !!

I did want to go for another baby but I’m more swaying towards trying the DMD’s as I’m worried that my arms are not going to heal !!

I’m booked in with my nurse next week to talk about the drugs ? But I just wondered if anyone had any tips on them go get me started 😉

Lots of love Kate xxxx

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naomih
1 year ago

I’m happily on tecfidera, I did want to go super strength on lemtrada, but my consultant was concerned about possible side effects as I am a single mum without any help. I’m just going on the fact that the consultant has my best interest and I will do whatever they say is best. I know others on here chose to be a bit more proactive. The best example being @traceyd who has a blog about her choice. Good luck and I hope you start to improve soon. 💜


chicolini910
1 year ago

I’ve had Copaxone, Tecfidera, Aubagio, and now I’m on Gilenya. All of them are once-a-day pills except Copaxone.

I had and loved Copaxone for 13 years with only 3 relapses. Then my neurologist switched me to the pills, of which I have had a hard time with side effects.

I was told by my doctor then that she switched me from Copaxone because it only prevents exacerbations and the pills help slow the progression as well. Now, after reading, I’ve found that my doctor was not telling me the truth (or, as I have found in the past, she may not have known the truth).

The truth is, there are no FDA-approved medications for secondary progressive.

So I say, if you are going to start meds, which I’m sure is a good idea, look into what your medical practitioner offers you; be sure you are clear with the possible side effects so you don’t blame it on the ms. And most of all, if you aren’t comfortable with your practitioner, go to another.


mmhhpp
1 year ago

I am on gilenya, it did work at the beginning now i am going rapidly down while on it…..they run mri they saw no active lessions and that is the end. No access to tysabri or lemtrada or stem cells… i guess i have to get on with it and accep it… xxx

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