Last reply 7 months ago
Help

I’m on ocrevus it’s been about 5 or 6 weeks since my second half has been givin an my symptoms are still up and runnning my double vision seems worst if anything I’m super scared an have no idea what to do… I juss wanna through in the towel:(

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dawson-mcwatch
7 months ago

Someone please help I feel so alone right now


itsmewithms
7 months ago

So sorry- sounds like things are a mess for you right now. My mom passed away (early onset Parkinson’s) but I always think back to the bedtime story/book of my daughters – when Alexander had a bad day – take a read https://www.youtube.com/watch?v=w6HhKlpp7ok

Sometimes I think I am Alexander…then I think about it and all the wonderful things I’ve had in my life and all the wonderful things I still have…even though I also have MS.

I remember reading this to my daughter when she was little and in a sulk and tell her in my best mom voice “My mom always told me there would be days like this”…There are days like that…and that makes me appreciate the other days and all the wonderful things in my life.

Hope tomorrow is better. I’ve been on Copaxone and Rebif in the 15 years since I’ve been diagnosed. In that time I’ve had a series of relapses that were quickly managed with massive doses of IV Predinisone. Now I am having issues but as there is no visible inflammation in an MRI (ie no active lesion) that isn’t an option. It may be a nerve issue surfacing from the hip replacement I had to years ago so we are trying gabapentin and today seems better.

I don’t know what type of MS you have but if it is RRMS and there is an active lesion ask if predisone is an option. It always helped me. Whenever a relapse impacted my vision, speech or gait my Neuro took it pretty seriously and acted quickly. Hopefully yours does as well or you have more options in Neuros.

And I hope tomorrow is a better day 😉


dawson-mcwatch
7 months ago

♥️ Thank you


rmdaniels
7 months ago

@dawson_mcwatch
Just wanted to tell you you’re not alone! Hang in there…you’re a champion over your circumstances if you choose to be; no matter what your circumstances are! 🥊🥊🥊
I’m praying for your courage & strength today! ☺️


stumbler
7 months ago

@dawson-mcwatch , all Disease Modifying Therapies (DMTs) work by trying to prevent further relapses/damage. It does not repair any existing damage.

However, once the MS stops attacking you, then your brain is able to try and rectify some of that existing damage. This does depend on the amount of neuronal reserve you have, so age is a factor.

So, be patient and let your brain do its stuff. 😉


mlgilber1
7 months ago

I’m on Ocrevus and after the first two half doses I felt worse for about two months, but then I was feeling better than before I started. It’s not super uncommon to have a flare of symptoms following the infusion. Then, after my first full it thankfully didn’t happen again. I hope you start feeling better.


dawson-mcwatch
7 months ago

Thank everyone, it brought tears to my eyes reading the responses I’ve gotten, and it gives me a ton more hope.. age is a factor and I’m happy I caught it early at age 20

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