Last reply 1 month ago
First Posting

Hi, first post.
I was diagnosed almost 7 years ago, in 2013. Initially, I was diagnosed with PPMS, this was changed to RRMS a year later after a big relapse that made it difficult to speak and walk.
Almost straight away, I was put on Baclofen and began 2 years of Tysabri.
Eventually, I was able to walk short distances with a stick, but a rollator is my weapon of choice.
After 2 years, I was taken off Tysabri due to rapidly rising JC levels and after a 12 week wash out, put on Daclizimab. I only managed 6 months on Daclizimab as I didn’t cope well with self injection. I was then put on Gilenya, which I have been on for about the last 3 years.

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stumbler
1 month ago

Hi @ian_johnson and welcome to our clan.


vixen
1 month ago

Hi @ian_johnson, welcome to Shift. Gosh, haven’t heard of somebody being re-diagnosed from PPMS to RR! How is your mobility doing 7 years later? Glad that Gilenya is working out for you!


ian_johnson
1 month ago

Thank’s for the welcome guys!

Tysabri has probably pulled me back from the brink. I see a private local physio about twice a week for something called Emmett therapy (it’s a bit like acupressure), which has helped with my mobility along with voice and swallowing. A can ‘walk’ unaided around my flat, but outside, I depend on my rollator and now a wheelchair if I’m going any distance. Vertigo was an unwelcome addition to my list of symptoms. My neuro thinks I’m on the verge of being SPMS. If/when it gets approved by NICE, my neuro thinks I’ll be a good fit for Siponimod (guinea pig time again).

One of my lesions is in the front of my brain in the area that controls emotions. This used to make me burst into laughter for no reason- embarrassing in an open plan office! If you’ve watched the movie “Joker”, you’ll know what I mean.
Fortunately, using CBD oil for 18 months has greatly reduced this symptom.
Even my neuro and MS nurse commented on the improvement.

I still work full time as a design engineer and drive an unmodified automatic car.


stumbler
1 month ago

@ian_johnson , which CBD Oil do you use?


ian_johnson
1 month ago

At first, I used CBD softgels from Amazon, made by Hofigal, a Romanian company.
I than started using CBD oil imported from Switzerland by a company called Blossom, based in Sunderland.
When I can afford it, I buy CBD oil from Hempworx in the US. It’s expensive at about £75 a bottle, but it’s good quality and you get 30ml bottles. They do naturally flavoured as well as peppermint flavoured CBD oil. As it’s stronger, I can use less.

Please note that this is CBD oil. You can not get ‘high’ on this stuff – THC (cannabis) does that, that is why it is illegal in the U.K.
The recently authorised Savitex contains THC and can cause you to fail police drug tests.
No idea if CBD oil can cause you to fail drug tests. Does anyone know?

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