Bit of good news 😁😁😁😁😁: Well I'm... - My MSAA Community

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Bit of good news 😁😁😁😁😁

janetb1968 profile image
janetb1968
β€’21 Replies

Well I'm still JCV very low positive so the MS nurses told me today when I was having my 8th Tysabri infusion. They are happy and i am..........just got the MRI next week - fingers crossed. Hope everyone is as well as u can be and it's getting pretty chilly here in Lancashire UK 🀢🀢🀢🀢 4 degrees today xxxx ❄❄❄❄❄

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janetb1968
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21 Replies
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GildaS profile image
GildaS

Good news, indeed! I had to look up what 4 degrees Celsius translates to in Fahrenheit: about 39. That is nippy. We have been having lows in the 20s at night here in Santa Fe, New Mexico. Winter is almost here, here. I love reading posts from different countries. We all have so much in common on this board, regarding of where we live. Best of luck on the MRI.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Way to go janetb1968 πŸŽ‰πŸŽ‰ fingers crossed for your MRI and no surprises!! It's getting colder here in NY also! Brrr❄️ we already had some of the sn*w, bad word! πŸ˜„πŸ€—πŸ’•

JπŸŒ πŸŽƒ

jimeka profile image
jimeka

Great news Janet, let’s hope the Tysabri is working. I have never been tested for the JC virus, maybe because I have not been offered a dmt. 4*. We had 12* at this side, it’s been a beautiful day. Someone told me today that snow is on its way, too early. Hope the mri goes well, blessings Jimeka πŸ¦‹ πŸ€—

MS_Indestructible profile image
MS_Indestructibleβ€’ in reply tojimeka

I've not been tested for jcv since Rituxan is pretty much PLM free. There are zero known cases of PML from any ms patients on it for all of theses years.

good news indeed. Let's hope your MRI results reflect the same good news. Stay warm

Ali_B62 profile image
Ali_B62

What's JCV? Best wishes from a Bolton born woman living in the North East. :-)

janetb1968 profile image
janetb1968β€’ in reply toAli_B62

It's the John Cunningham virus which can be brought on by high levels of the virus. It's associated with Tysabri which is what im on for my MS at Preston. JCV can cause the PML infection which isn't good at all u will probably need to Google it all lol xxx nice to meet a fellow Northerner and my mum was from Bolton. Nice to meet u xxxxx

Ali_B62 profile image
Ali_B62β€’ in reply tojanetb1968

You too! I didn't realise there were all these issues linked to DMD's, sounds quite complex are you R/R or more serious? :-)

Ali_B62 profile image
Ali_B62β€’ in reply toAli_B62

Searched and understood. Thank goodness you are very low positive, excellent news! :-)

janetb1968 profile image
janetb1968β€’ in reply toAli_B62

Hi I'm R/R but very active apparently that's why I'm on Tysabri XXX

Ali_B62 profile image
Ali_B62β€’ in reply tojanetb1968

Hope it calms down for you and that Tysabri continues to help. :-)

kycmary profile image
kycmaryβ€’ in reply tojanetb1968

Hi janetb1968 I was on Tysabri for approx. 11 years off & on. Dr. took me off as the longer ur on it the bigger the chance of contracting the PML. I have been as high 1.5 at the last check it was 1.3 but it was explained to me that those numbers mean nothing because once you test positive for the JC Virus it could hit at any time & then BLAM! there is no climbing out of it back to what ever ur normal was. IF you live what ever deficit it gave you is permanent. That is why I agreed to quit Tysabri & I loved it. Tysabri kept me on my feet, Now I waiting for the paper work & what ever else to start Ocrevus. I am R/R

janetb1968 profile image
janetb1968β€’ in reply tokycmary

My level is 0.75 up from 0.65 but it's still low hope the Ocrevus goes well for u im also R/R xxxxx nice to meet u 😁😁😁😁😁

Morllyn profile image
Morllyn

Good news indeed!

It got to 71degrees here in eastern Tennessee yesterday (21.6667 degrees c). Supposed to get to 66 degrees today.

bxrmom profile image
bxrmom

Good luck with your MRI janetb1968 Hope it's good news. Keep us updated when you can πŸ˜‰

Jessie

Kenu profile image
Kenu

Glad to hear you are doing better πŸ‘. Blessing that you’re MRI is good πŸ‘πŸ™. πŸ˜‰πŸΎ Ken πŸŽƒ. We had the rain and cold a week ago and now we are back to 70’s for a week πŸ˜ƒ. Indian summer right now

janetb1968 profile image
janetb1968β€’ in reply toKenu

Wow! I love indian summers not had one in the UK for ages xxxx hope you've got ur shorts on hun xxxxx

Kenu profile image
Kenuβ€’ in reply tojanetb1968

I doπŸ˜ƒ I’m hardcore leave them on as long as possible πŸ‘. Long sleeve T-shirt in morning as it is in high 40’s and then 60’s by noon πŸ•›. Great weather πŸ™ love it this time of year πŸŽƒπŸΎ Ken

kdali profile image
kdali

Yay for low JCV! I hope your MRI results are boring. πŸ€—

janetb1968 profile image
janetb1968β€’ in reply tokdali

Me too hun xxx

Guava69 profile image
Guava69

All the best on your MRI. I think it will go well. I've been on Tysabri for over 6 years!!! so it's been doing its job. I'm here in the Sunshine state of Florida so I'll send some sunshine across the pond to youβ˜€οΈβ˜€οΈπŸ˜Ž Enjoy

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