kathboo 24/03/18
Last reply 3 months ago
Things getting worse

Hi
This is the first time ive been on a forum or anything similar. I was diagnosed with some rare type of MS in 2012(i was 32). It’s a bit like I’ve had a stroke; my left limbs are pretty much useless but i can manage with a crutch to get around a bit. The last few months my right toes have started curling under and its scaringme to death. Im struggljng to get from one side of the room to another. Ive not particularly got a question, im just hoping for some words of wisdom/posititivy!? X

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grandma
3 months ago

Hi Kathboo and welcome. It’s all very confusing even after half a dozen years please don’t be frightened, were all in the same boat, just in different positions in the rowing crew! You don’t say wether your on any meds and by the way ms is often mistaken for a stroke because of the similarities! You want positivity, I’ve had the bugger for 25 years and I’m still here, only just had an electric wheelchair courtesy of the NHS, am 62, live alone with 2 big dogs (they get walked with their leads attached to the arms of the Mobility scooter) so basically there is nothing you can’t do, you will find a way round things, we are experts at finding alternatives to anything. We are also experts at silly questions because with ms there is no such thing😍


stumbler
3 months ago

Hi @kathboo , always nice to welcome a virgin to the forum. 😉

Anyway, are you in touch with your MS Nurse? If so, contact them and ask for a Neuro-physio assessment, to understand the problems and ascertain whether orthotics/splints may help.

You could also pop in to the West Yorkshire Multiple Sclerosis Therapy Centre (http://mstherapy.org.uk/mstherapy/), which is in Leeds, and see if they can suggest any complementary therapies for you.


vixen
3 months ago

Hello @kathboo, nice to meet you. It’s good that you’ve found Shift. It’s great for company and advice, and to know that you’re not on your own no matter what you’re going through. Do you see a neurologist regularly? I haven’t experienced what you are currently but hopefully you might get some posts about it.

In terms of positivity, I’m sure you’ve seen a couple of news items this week about MS. And of course, Ocrevus, which for the first time is a treatment for some folk with PPMS is hopefully about to be approved for the UK. Research and treatments are developing so rapidly at the moment. Hopefully in the next few years all of us, no matter what age, stage and problems will be able to benefit in some way. I hope you find 5is site useful. You can use the search magnifying glass at the top to search for posts about particular topics. Take care x


kathboo
3 months ago

Thank you for your replies. Normally i think i can battle anything, just having a few down days like we all do i guess. Im due to see my MS nurse in June, the annual check, but am seeing if I can move it forwards.
And thank you @grandma for saying there’s nothing you cant do. That helped. I also have dogs but have to rely on others to walk them. At least a wheelchair would mean i could go out with them again!
Ps meds wise i take baclofen but not sure it does anything!


stumbler
3 months ago

@kathboo , the Baclofen is a muscle relaxant, which should help with muscle stiffness and spasms.

It’s a drug where you have to find what dosage is right for you by trial and error. Not enough and you get no benefit, too much and you can further weaken your legs. So, you might want to discuss with your Doctor a slow increase in the dosage.

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