Last reply 5 months ago
Control of MS & sharing with each other

Hello everyone

I’m currently on steroids after having a sensory relapse with pins and needles, numbness and pain in my legs. I really really want to have some more control over my MS rather than it having control over me.

I got double vision (fourth nerve palsy) a few years ago then was diagnosed with Clinically Idolated Syndrome. Then last year, my eye went skew-whiff, it was a different type of double vision this time (side by side so harder to see), dizziness, blurred vision, eye pain, legs buckling etc and was bed bound for a few weeks. Then finally got diagnosed with relapsing-remitting MS around Hallowe-en. I was so relieved and happy when that happened as I could finally make changes in my life after waiting for so long. However, since then, I had a pseudo-relapse in the sun, some fits and my current sensory relapse.

I would really like to talk to other people about their experiences – what medication they have found that works for them (I tried injecting Plegridy as I thought a few hours of flu would be fine but there were other side effects that lasted longer than that so in a few weeks i’m hoping to start on Tecfidera) and what helps them. There is so much information online about different diets but some of them are quite extreme and would like to enjoy life. My boyfriend has started making smoothies in the morning and plan to eat in moderation. I’m hoping to try out the MS Therapy Centre in Leith, Edinburgh which sounds great. I know there are several Living Well with MS groups but so many are online and would rather meet people face-to-face so have signed up for one in May.

I started using a bullet journal last year and went on the online course for how you can use them to help with your MS. I downloaded a few games on my mobile to help that are supposed to help your brain work better too. I have read about the MS gym online: you can watch and take part in videos of certain exercises and stretches that are geared to help. I watched someone saying how exercise really helped them so that’s my next plan. Bought Montel Williams book and my Mum bought me “Multiple Sclerosis for Dummies” which is geared towards to the American market but does contain an awful lot of information. Audio-books have been my saviour, particularly when i’ve had eye problems. Also applied for a bus pass so fee bus travel is a plus! Another plus is it helped me to evaluate my life including taking the plunge and changing jobs after 12 years in an industry. My friend has Lupus and told me about spoon theory which has helped me to think about the time I spend with people and I find I generally see good friends and family that mean a lot to me now. My boyfriend accompanies me to every appointment – it would have been so much harder if he wasn’t there.

Sorry for the long message, I’ve started telling people and everyone seems to know someone who has MS so thought this would be a good idea as no one will understand as much as someone who is experiencing similar symptoms and it is always fantastic to learn from and share with others.

Hugs
Tamsin

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stumbler
5 months ago

Hi @tamsin , I admire your approach.

You seem to have your way forward mapped out, although, be careful of letting MS rule your life. Don’t allow MS to define you.

The MS Treatment Centre is a good place to meet experienced MSers. Don’t be put off by the age of the members. It’s difficult for the younger demographic to attend through the day, as they are expected to work for a living!


dominics
5 months ago

@tamsin – a very thoughtful and considered approach. That attitude will serve you well.

Try to be guided by evidence, proper scientifically proven conclusions. Everyone will suddenly have an opinion or a story and sometimes it can get overwhelming when you are trying to honour their good intent but not actually do everything they have convinced themselves is good for you.

The Internet is great for sharing but it also a real boon for the nut-jobs. This recent radio 4 program is really interesting: The Digital Human https://goo.gl/3RAVnB

ShiftMS is a superb site for supporting one another. The great site for the more science-based discussions the BartsMS blog. Dr Aaron Boster in the US runs a really good YouTube channel for MS patients. Well worth subscribing to IMHO.

Any questions or queries, then do post here. People have all sorts of experience and it is unlikely that someone won’t have already faced a similar challenge.

Best,

Dominic

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