Last reply 3 months ago
Date confirmed and now im scared

After meeting with my nurse today I’ll be starting Ocrevus on Monday and I am scared tbh. I’m worried because since diagnosis I don’t know if I have had any relapses or not. The majority of people on here say they lose function of arms or legs, body parts going numb during a relapse. (Which can be looked as a positive thing for me) it’s just hard to understand. Questioning myself if it’s ms or something else which isn’t helping my situation but obviously the professionals have confirmed that I do. I haven’t experienced those symptoms since being diagnosed in September 2018 the main symptoms i have is sharp pains from time to time, the loss of cognitive function, double vision and extreme heat sensitivity. I’m just feeling fearful of the unknown during and after treatment

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thegalvan5
3 months ago

I don’t know that medicine. But everyone’s MS is different when it comes to symptoms. I do suggest that everyone the minute they are diagnosed start a disease modifying medication. They don’t stop progression but slow it down. Also diet items containing equal or aspartame can mimic symptoms of MS so stopping that may help.


bing15
3 months ago

I don’t fully understand the criteria to be offered ocrevus but I know that if I could go back in time before my recent relapse which has been debilitating I would have taken it sooner. I, like you was too scared of trying anything before, now I wish I’d have snapped their arm off, they can’t promise it will fix me but it can prevent further damage.


fingersandtoes
3 months ago

https://jnnp.bmj.com/content/89/8/844

Have a read of this paper – Time matters in multiple sclerosis. It will confirm you are doing the right thing by going on treatment now. I’ve heard really good things about Ocrevus too. It wasn’t on offer yet when I was diagnosed at the end of 2017. I chose to go on Tecfidera and so far it’s working out for me, though my lymphocytes are getting a bit too low. I think if Tec doesn’t work out and I’m offered Ocrevus, I’ll go for it.

My relapses have been double vision x2, optic neuritis, nystagmus and pins and needles in feet and legs. No loss of function – I even did a long run on my tingly legs. My body figured out what was where pretty quickly when it was forced to!


cosine
3 months ago

@bing15 Are you on any MS diets like the keto diet?


Anonymous
3 months ago

Thank you everyone for your responses, I appreciate them a lot


bing15
3 months ago

No nothing special I just try to include as much veg as I can to a normal diet.


doubleo7hud
3 months ago

*wraps karate bandana type thing round head, makes a p*ss poor attempt at doing the crane and lands face first in a pile of sh1te 😂 *

Sounds like doctors have caught it early grasshopper, your lucky. You gotta weigh it all up matey you have been offered the best treatment choice without being too far into the joys of MS like a lot of us lucky feckers. If you want longer on a set of normal legs and not a set of floppy dildos like mine then snap there hand off it’s all offered to delay the progression of our illness. Which means you have Longer time doing the things you want to do. There’s side effects with it but like I say weigh it up and make yourself a game plan and plans for the future.

Good luck matey and we’re all knocking about on ere if thee wants a natter 👍


Anonymous
3 months ago

@doubleo7hud thanks mate, you’re right. I’ll be sure to keep use updated on how things go


rmdaniels
3 months ago

@fingersandtoes
Great article! Thanks for sharing the link!

@lukezni
I hope all goes well Monday. Looking forward to hearing how it goes!


potter
3 months ago

I was diagnosed 11 years ago and had my first relapse 2 years ago. I woke up to the right side of my body being numb. Steroids helped me through it, I was able to get around the house in a couple of days with a walker. Stressing about what might happen in the future does not help. Stress is bad for MSers. I think I had the relapse because I was taking care of my elderly mother in-law. I was shopping, cooking and taking her to the hospital and doctors appointments. I was totally stressed out trying to care for her. I have learned to step back from stressful situations. Other members of the family are helping, I only do her grocery shopping and my husbands helps me now. Potter


dawson-mcwatch
3 months ago

I’m starting that same treatment on the 8th next month I’m soo nervous but reading the comment above really calms me down


row18
3 months ago

I was diagnosed last year and I’ve had Ocrevus as my first DMT. My MS was very aggressive and at the moment, some of my symptoms have calmed slightly (partially due to the drug, and partially due to me understanding how to manage my MS a bit more). If you haven’t had the big scary loss of limb symptoms yet, hitting it hard and fast with Ocrevus will give you even more time before you ever have to deal with an experience like that – or it could hopefully prevent that from ever happening. It’s not scary, you will be okay 🙂


dominics
3 months ago

No need to be scared. Barring being on the slab being operated on you will as closely monitored as you are ever likely to be.

I hade round 1 in Jan, round 2 next week. Not the slightest issue and the nurses are there the entire time.

Take a book, take headphones and some tunes and enjoy just sitting there doing nothing for 6h.


fingersandtoes
3 months ago

Hey with everyone here talking about stress can I put in a word for the Overcoming MS programme? It’s a big, evidence-based book, free here in the UK and also in NZ and Australia. I think the ebook is free in the US. It’s run by a charity so no commercial motive like other MS diets/programmes.

I discovered it just after my diagnosis and it really made me feel better and gave me hope. It’s a lifestyle programme that includes diet, exercise, Vitamin D, taking your medication and MEDITATION. That bit’s been the hardest for me but now I’m getting more into it I can highly recommend it. I’m so much more calm than I was.

Mostly I meditate at the end of a yoga session – I’m halfway through a yoga foundations course which I think the programme influenced me to sign up for. But I do Headspace sometimes and I’m in a meditation group at my work.

I highly recommend it! Also the book gave me so much hope.


Anonymous
3 months ago

Thanks everyone for the reassurance 🙌🙌

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