Brief Overview of My History Past Year P... - My MSAA Community

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Brief Overview of My History Past Year Posted 11 Months Ago and Today!

MyNameIsVictory profile image
8 Replies

TYSABRI It does a phenomenal and remarkable job at preventing new lesions and the textbook defined clinical relapse—- but that in fact is half the battle for many of us. Previous damage can wax and wane symptomatically with a wide range of variability. I was diagnosed 3 yrs ago with extensive lesions only after a profound loss of function after a surgery occurred but had in fact demonstrated early lesions 6 years prior on a MRI that produced minimal symptoms of numbness and tingling the neurologist did not correlate with early MS. Unfortunately the disease progressed substantially over that period of time. Following initial steroid therapy and slightly JCV+, I was started on Tysabri with positive lesion control but progressive symptoms that wax and wane. My MS specialist is hesitant to change therapy due to the extensive disease already present even with the persistent immunsuppressed state I am clinically in due to Tysabri (I appear clinically like I have leukemia/lymphoma) due to the drastic effects of Tysabri working like its “supposed “ to. In addition to the symptomatics I stay sick and have developed an extremely heavy allergy burden... To keep on it or not is the “Question?”

Well that was the Question...

Following military retirement after 24 years, relocating to Florida, and being referred to a MS Center of Excellence at the VA, I have since transitioned over to Ocrevus with subjectively much better physical and clinical symptoms to include labs since Dec 2019. Objectively, still anemic and being followed closely for that but otherwise anticipating what the MRI will show after having been on it for a year. My second full Ocrevus infusion is in early June! 😉

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MyNameIsVictory
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CalfeeChick profile image
CalfeeChickCommunityAmbassador

I love your "Positive " attitude. You made a good decision to get off the tysabri and on to the Ocrevus. I am definitely JCV positive and know why. I was raised in the Sierra Nevada Mountains of California and we caught "chipmunks" every summer and kept them as pets until early fall. I'm sure that's where my exposure to JCV came from.

greaterexp profile image
greaterexp

I love your great smile and positive attitude! Thanks for sharing your story.

Cutefreckles72 profile image
Cutefreckles72

You have a Great attitude. Keep it going. 👍 I will take my first full dosage of Ocrevus in May. I hope it will continue to help. I have a question. What type of brace do you have on your legs? My right knee locks back when I get ready to walk and while I am walking. I need a brace to help this leg out. Thank you for your help.

MyNameIsVictory profile image
MyNameIsVictory in reply to Cutefreckles72

Hi, and thanks! BREG,I call them my “Breg Legs” The Prosthetics folks where I’m treated fit you for them and they are a lifesaver when it comes to challenging days walking and it doesn’t help I have bad knees either 😉

Cutefreckles72 profile image
Cutefreckles72 in reply to MyNameIsVictory

ok, thank you. I will let him know. I need one.

rjoneslaw profile image
rjoneslaw

Welcome to the group

I’m on o as well I had my 1st full dose of o this past Jan 2020

mm1527mm profile image
mm1527mm

Glad to hear you are doing well on ocrevus. I am also on it. First full dose this month.

kdali profile image
kdali

Lovely update!! I’m excited to hear how year 2 goes for you 🎉 Ty so much for sharing and for the positivity 🥰

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