#ocrevus

Multiple Sclerosis patients in Gaza are forgotten amidst the flaming war. No medical care is available for them, and no hope is left for them to get their must-take infusions.

Doaa is a case of an MS patient in Gaza that needs your support urgently. Help Doaa by donating or sharing her story with your network on all social media. If you support, you are not supporting one person, but you will support a family of 7 members who are waiting for the safety, peace, and healing of their mother.

There’s no lag to my thoughts at all right now; it’s no longer feeling as if I have to PUSH my thoughts out.

It’s so fucking freeing… I can think.

I've been on Ocrevus for about 2 years and it works great. It's also nice that I don't have to do regular injections. However I found one flaw in it and that is it has a gap.

Before I was on this medication I was on Copaxone and before that Rebif. Both of those medications are injectable three times a week. Whereas with Ocrevus is an infusion every 6 months. Here's the problem with the weekly injections there's no lag time, with the 6 month infusion you get the most strength at the beginning. Then as time goes on it gets weaker. By the time I get to the 5 months mark it is getting so weak that some of the MS symptoms come back on me. I wish something could be done about that.

I’m on my final month and both my lower legs and feet are tingling and burn. My balance is off and my tremors are as bad as they ever have been.

Others I’ve talked with have told me that on the once a month infusions there’s a week gap. One told me that the first week they feel terrible. The second and third weeks are good and the fourth week is bad. All said infusions while they improve life are prone to gaps in treatment

Of course the medications are better than going without them and dealing with a runaway MS.

Welp, I had my neurology appointment today. I got to see the nurse practitioner again (they switch back and forth) and she’s super nice. She was talking about PML (the brain disease  Progressive multifocal leukoencephalopathy) and I said that means “Pissing Myself Laughing” online. She started laughing and thanked me for telling her that, lol!

Anyway, she said my MRIs and symptoms don’t match up, to which I thought she was gonna say I was making things up or something. But she said she believes because I’m getting worse over time, I have Secondary Progressive MS. She talkied about (and gave me info on) Ocrevus infusions. I wasn’t too worried until she brought up the higher risk for breast cancer and I certainly don’t want THAT. She said regular screenings and all can catch it early if it happens but um....ick? So for now, I’m staying on Glatiramer Acetate (Copaxone) and was supportive of me giving medical marijuana a try to see if it eases some issues.

I had the JC virus bloodwork, Vitamin D and some other thing done after. I go back to see her in October, then to see the doc (boo) in January. She was surprised that I wasn’t already on disability and said she can tell I can’t work and that I shouldn’t have a problem getting it. Hope they talk to her next time!

Mom took me to the Olive Garden after, then to get us a soda at McD’s and they said they didn’t have Dr. Pepper, so I got Coke. We go to pick the drinks up and they’re pouring them from 2-liter bottles inter cups! We have those at home (I like fountain soda). I said I wanted an iced macchiato instead and they gave me a large instead of the $2 tiny cup so that was okay. But at least tell people you’re using bottled drinks!