Last reply 4 months ago
Saying 1st hello!!!

I was diagnosed with MS in June of 2018. According to my tests I’ve had it for over 2 years. No lesions on my spine, however one pretty close to it. My neurologist recommended Ocrevus infusions which I began on Late November 2018. I go for my 1st full infusion On April 26th this year. The only side effect I had was a horrible mind blowing migraine which had me in the ER on morphine that’s how bad. I don’t think it’s made much of a difference. I’m giving it one more year as per the Dr’s that’s what they need to see if it will slow the progression. My symptoms are slowly getting worse. Hands and feet tingling, weakness, blurry vision, headaches, brain fog and sensory issues, swallowing issues, pain all over and prickly feeling fatigue. Walking long distances getting up from a seated position all are a problem. I still work part time, it’s really hard. I’m trying to seek disability. On top of all of this I have no thyroid. So both I am combating at the same time. I’m glad there is this group as I’m eating lots of support

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4 months ago

Hello @aaronsgurl, welcome to Shift, which is especially great for the newly diagnosed. Ocrevus has only recently been approved for RRMS but not PPMS in the U.K. Like other DMDs, the purpose is to slow progression and limit the impact of relapses. If you use the search button on this site for Ocrevus, you will see other posts on in. Some have started in the U.K. great that you’re still working, what do you do? For your next infusion, they might think about slowing down the infusion and that might reduce your headache? Keep fighting the good fight! X

4 months ago

Hi @aaronsgurl , you are most welcome.

To one extent or another, we’re all in the same boat. We just have to ensure we have a good cruise! 🚢

4 months ago

Hello @aaronsgurl and welcome! I’m one of the old codgers, have had the beast for 25 years that I know, but suspect I had it long before because so much fell into place when I was dxd. Am 62, have been on Tecfidera for a year after 23 years on Avonex. Hopefully you are young enough to be able to have a near normal life. A diagnosis if ms is no longer the life sentence it used to be, there are so many DMT’s available now which there wasn’t 25 years ago, and the current idea of hitting ms hard and fast seems to work so good luck and keep posting, we’re always here for a natter or a question, and remember with ms there’s no such thing as a silly question🤙😉😍

4 months ago

Thank you everyone for the kind welcome!!! I have had such highs and lows from all this. Sadness grabs me some days and won’t let go. Especially when others don’t understand at least a small amount of how I feel. My husband has gone to a role of my caregiver and main support, but I feel so bad for him sometimes. I want to feel at my best and not go through this nightmare.

4 months ago

@aaronsgurl , try not to feel bad. You didn’t ask for MS or go out of your way to acquire it. Guilt is the last thing we need.

The relationship with our partners is always going to change as the years roll by, although none of us envisaged this scenario. But, if the roles were reversed, I’m sure you would be only too willing to adopt the care-giver role.

Life is all about give and take. And we are taught that it is better to give than receive. So, your husband has been presented with this opportunity to excel at giving. This must strengthen your relationship and we must ensure that this is fully appreciated. A little gift now and again says a thousand words.

If your picture is anything to go by, your husband has a very pretty wife, which is a lovely bonus.

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