MS for 19 years but holding my own

[sophiekerr1977]

I was diagnosed in 1997, injected Avonex for 10 years, then switched to Tysabri. Just had my 113th infusion at Johns Hopkins!

[Sukie427]

Hi, Sophiekerr and welcome! How fortunate you are to have such an excellent center to care for your MS! Seems like you are doing well on the Tysabri. If you don't mind my asking, have you been tested for the JC Virus and if so, were you negative? Sukie427

[sophiekerr1977 in reply to Sukie427]

Hi Sukie! Thanks for the welcome! I get tested for JCV every 6 months at the same time that I get my infusion. It's very convenient. Yes, I love Hopkins; I get all my specialty care there. I worked there for 25 years and for a lot of that time it was a fabulous job. Then it turned very bad and there was so much stress that I retired on disability.

[sophiekerr1977 in reply to sophiekerr1977]

Sukie: And oh yes, I've always tested negative.

[Sukie427 in reply to sophiekerr1977]

My husband and I lived in the DC suburbs of MD when we first got married 38 yrs ago. I worked in DC for 6 yrs. He initially worked in Baltimore and then transferred to suburban DC. We left there in 1984 to move for work to South Florida, where we lived for 31 yrs and hated every single minute of it! Now we live in Sedona, AZ and love it! I am on Tecfidera because I tested + for the JCV so the docs won't put me on Tysabri. I hear it's a great drug; everyone I know who is on it is doing very well. So best of luck to you and keep on keeping on! Sukie

[erash in reply to Sukie427]

I love Az! Stationed at Ft Huachuca is n Sierra Vista 1984-1986.

[sophiekerr1977 in reply to Sukie427]

Glad to hear you've found your "home" in Sedona! I've always wanted to go there. It's not too hot ? Thanks for your good wishes and I wish you the best of luck too!

[CalfeeChick CommunityAmbassador in reply to Sukie427]

Please continue to get tested for the JCB or PML because the tecfidera medication is also in the same group as Tysabri. Has high risk factors for the PML. It's good to hear that you're doing well though. My first Nuro was going to put me on Tysabri even though I tested positive for the JC virus. We weren't happy with that neuro and I now go to The MS clinic at UCSF medical center. I haven't started any DMD but I am taking gabapentin for my tingling nerves. Keep coming back here, Lynn

[WAshingtongirl]

So happy to meet you! I'd say you look good and healthy (because you do!), but don't take that to mean I don't think you have MS or don't struggle with it, as our well-meaning friends and family often do. 😉

We're a compassionate group of friends who like to laugh, encourage, and lend a shoulder or listening ear whenever one is needed. Welcome! 💕

[sophiekerr1977 in reply to WAshingtongirl]

Thanks so very much!! What a really nice welcome !

[erash in reply to sophiekerr1977]

sophiekerr1977 i echo WAshingtongirl words. Welcome! 😊

[CalfeeChick CommunityAmbassador]

Wow, you are certainly an MS warrior! Point glad that you are on this site. keep on coming back great people here and either we can help you, listen or you might be able to help one of us. Lynn

[CalfeeChick CommunityAmbassador in reply to CalfeeChick]

I tested positive for the JCV with my initial blood tests. My definitive appointment is December 19 and then I'll start finding out what treatments I will have.

[sophiekerr1977 in reply to CalfeeChick]

Have you been on Tysabri or were you just going to start?

[jimeka in reply to CalfeeChick]

Hi Lynn is the JC virus a result of the medication that you have taken? I had never heard of it until I came on this site. Blessings Jimeka

[sophiekerr1977 in reply to jimeka]

Jimeka, The JC virus is very common, but you don't want to test positive for it if you're taking Tysabri and some other MS treatments. It's a risk factor for PML, which can cause severe disability or even death. That's why they keep you on a very short leash when you're taking Tysabri.

[CalfeeChick CommunityAmbassador in reply to sophiekerr1977]

Agree, I was told the PML is like "mad cow" disease for humans. Very serious!

[CalfeeChick CommunityAmbassador in reply to sophiekerr1977]

I was also told I could take to Tysabri but for no longer than 24 months because of the PML risk. I'm not planning on taking it at all

[sophiekerr1977 in reply to CalfeeChick]

That sounds wise. There are so many drugs now, including the pills, but I've never done any research because Tysabri has been working for me.

[erash in reply to CalfeeChick]

I would have made the same choice CalfeeChick

[lexsarset in reply to CalfeeChick]

Hi, I was taking Tysabri for about six months after using Tecfidera. I was always stressed about the risk of PML so i discontinued my treatment after my November infusion. My walking has declined and lesions were found on my spine. I thought it helped me walk better but it did not help me overall.

[CalfeeChick CommunityAmbassador in reply to jimeka]

Re:; JCV, I learned about it while doing my MS research while undergoing the first tests. Somewhere in my research I recall it said it was from somewhere along in your life you were either exposed to it and had built up an antibody or you had eaten incorrectly cooked chicken or pork. 😊🍽🍗

[sophiekerr1977 in reply to CalfeeChick]

That sounds about right! I have never heard about the chicken or pork though. Off to Google!

[jimeka in reply to sophiekerr1977]

Thankyou both Lynn and Sophie for sharing what you both know about the JC virus, I too must google it. I hope all goes well for you on the 19th Lynn. Keeping you in prayer Jimeka 🌈🙋

[erash in reply to CalfeeChick]

CalfeeChick please let us know how that Dec 19th appt. goes

[jimeka]

Hi Sophie, welcome to a wonderful place of friends, we are all different but we have ms in common. We all help each other, have lots of fun, on good days and bad, someone is always here. Blessings Jimeka

[sophiekerr1977 in reply to jimeka]

What a wonderful, welcoming place this is! I have never done anything like this before but I'm glad I'm here now.

[Jesmcd2 CommunityAmbassador]

Hi sophiekerr1977 and welcome l cant say more than what everyone else has already said Except welcome to our ever growing family ♡

Someone is usally around to listen if you need to vent, a shoulder to cry on, or a hug if you need one.

As you can tell we talk about almost anything. And ask about everything. Especially me. Hahaha

I was dx'ed about 18 mos ago so lm still learning everything.

Most of all we support eachother here!

Ps l love your picture you look so happy!

[sophiekerr1977 in reply to Jesmcd2]

Why, thank you! And best of luck to you!