Howdy : Dx 2009, prob affected for 2yrs b... - My MSAA Community

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Howdy

Texascubbie profile image
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Dx 2009, prob affected for 2yrs b4 that. Lab rat in early phase II clinical trial of what's now ocrevus. It works for me. Bad lassitude and heat sensitivity. I had a really dramatic mri that scared people until they narrowed it all down over 8 days in a hospital. It's been a long ride already! Wishing everyone health and patience

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Texascubbie profile image
Texascubbie
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7 Replies
jimeka profile image
jimeka

Texascubbie hello and welcome. You certainly have a lot of courage being a clinical lap rat, without people like you willing to give anything a try we would never know half the things that we do. I am pleased that the Ocrevus has been successful. May I ask what type of ms have you been dx with? Here in the uk Ocrevus has yet to be allotted to the NHS. Thank you 😊 blessings Jimeka 🦋

Texascubbie profile image
Texascubbie in reply tojimeka

HI-

I have RRMS. I really hope y'all get a chance to use Ocrevus over there--I know it's not a miracle drug but hey, the more things we have to help, the merrier!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Welcome Texascubbie Sounds like you HAVE been on this Roller Coaster for awhile. But sounds like you have a good MS team!😀

I think a lot of us deal with fatigue and Heat????😭

I'm sure you will find some great ideas here from others! And can't wait to hear yours!💕

Jes 🌠

Fancy1959 profile image
Fancy1959

Helllo Texascubbie and Welcome to our extended family from Fancy1959. We are glad you found us and we want you to know you have found a safe place full of some of the most caring, compassionate, and kind people I have ever met. We encourage you to come and ask questions, voice your concerns, or talk to us if you simply need to speak to someone who truly understand what you are going through. I too am on Ocrevus, but unfortunately I was not lucky enough to get on a clinical trial so I have to beg, borrow, and steal as the old saying goes the money to be able to afford this wonder drug. I've only had one full and fusion so far and I receive my next one in April. I've tolerated it well so far but then I'm a tough old lady and I seldom have bad side effects from any drug I have been on.

Know that we are just a post away if you need us. We're always here to listen to any troubles or worries you might have. We have much we can learn from each other and by sharing back and forth we will get to know each other. Take care until we speak again and remember together we are stronger!

Texascubbie profile image
Texascubbie in reply toFancy1959

Please do check out their copay assistance plan. I didn't get Ocrevus free because of the trial--I had a good neurologist and a better neurology nurse who helped me get the copay assistance!

Morllyn profile image
Morllyn

Texascubbie , glad to meet you! Welcome to the group!

greaterexp profile image
greaterexp

Welcome to a great site. I hope you find lots of support and information here. Thank you from all of us for being a guinea pig for us. So many folks are benefitting from your willingness to try a new treatment!

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