Hi all..does anyone have jcv and are you on any kind of treatment..the dr ordered abagio but im scared to take anything as most of you know i had a rough last 17 months,been able to function as good as possible last few months. Have ms dr app.in sept..have to go every 6 months since jcv..plus a new mri..which shes located at a hospital so shes doin the mri..it was a Catholic hospital here tht always did them but now they wont send cd of mris unless Catholic hospital. So 6 months ago we didnt really know were my brain was standing, its just so hard...trying to get out walk my dogs then im hereing rumors well she can walk why cant work??its upsetting..mine is so much cognetive and shrinkage..fatigue, im just tired of people saying remarks when they dont know sorry had to vent..and ask about jcv ..
Jcv: Hi all..does anyone have jcv and are... - My MSAA Community
Jcv
Hi! My antibody was so high that my only options were Interferons or Ocrevus or go get another MD. I chose Ocrevus. I will be starting it tomorrow.
I don’t remember the details of that drug. Have you used MSAA’s SEARCH? It could help you decide. There’s also some you tube videos on medications now that you can search around for.
As for the comments, it’s been a while since I’ve experienced that kind of ignorance. I do remember that it always caught me off guard. Taking a deep breath and praying that they would never experience my struggle, fear, and grief made me feel better.
I’m so sorry that other people feel the need to pass judgment. It’s what worries me, too, looking perfectly fine and physically functional but with a mind that doesn’t work the way it should. How do you explain that one, right? My therapist reminds me that I don’t owe anyone an explanation but I feel damned if I do and damned if I don’t. Hang in there!
I have been on Aubagio for eighteen months now with no side effects and last two MRI’s were stable and no new lesions.👍 This has been great for me. Hope things work out for you 👍🙏🐾. Ken
I am JCV+ which just means somewhere along my life I was exposed to the virus and my body built up antibodies to it. Through my research, it is recommended that I not take Tysabri or Tecfidera as there is the possibility of developing a brain disease called PML which is like "Mad Cow disease" for humans. My first neuro was going to start me on Tecfidera without even discussing it with me.. needless to say, I left him after 2 visits.
Hi CalfeeChick !
I need to clarify something you said for people just learning about JCV. When you are JCV+ it does mean you were exposed to the virus at some point in your life. However, it’s because the virus stays in your body and can become activated that is the problem. Not because you have antibodies. When the virus becomes activated in an immunocompromised person, it can cross the blood brain barrier and cause the horrid disease known as PML. The risk of PML becomes higher when an immunocompromised person takes an immunosuppressant drug like a Tysabri and Tecfidera.
Mad Cow disease, which has a human form, is very different in how it affects the human brain and how it is transmitted. Personally I wouldn’t describe PML as being the same. Sorry for being so picky...I blame 35 years of working with data where precision matters. 😳
I never had the virus, just the antibodies, as I explained. I verified all of my information with medical professionals when I received the information that I was JCV+. You are entitled to feel picky, however, please note I said "which is like" mad cow disease, not "is the same as" mad cow disease. No need to confuse or scare our members any more than they already are. BTW, I consulted an RN, an neurologist, psychiatrist, psychologist. And just because it's late, I am tired and a bit cranky, those medical professionals are my two daughters, one of which is "Board Certified" in three professions and also donates time working with children facing major health challenges. I don't generally advertise that here or anywhere else. Their privacy is theirs.
Yep exactly..are u takin anything
luvhair I am taking "symptomatic" meds to treat symptoms. Gabapentin for numbness/tingling, baclofen for spasms(Charley horses that vary from toes or feet or a whole leg) Modafinil to fight MS fatigue and help with focus. I also take something called LDN Low Dose Naltrexone, not FDA approved in low doses, but it blocks some of the negative nerve signals and allows your natural endorphins to come out, I love that stuff. What do you Take? Sounds like a good post question for the whole group!
I am jcv positive I'm getting ready to start my 1st treatment of ocrevus in the morning
Good luck Jackjosh Keep us updated how it goes for you today when you can.
Jessie
Hope your infusion goes well, please keep us posted. Blessings!
Yes keep us posted
And also I'm 27 and people pass judgement on me all the time I get dirty looks for using my handicap sticker all the time
I am on gilenya, ampyra, and low dose naltrexone (LDN).
They said no to gylenia
Did they also say no to LDN and ampyra
I have jcv and have been on rebif the entire time I've been dx which has been since Dec 2015. First thing you have to do is tune other people out, I'm new here but I know that just because someone can walk doesn't mean they can work! Stay strong!
Exactly..yea me n rebeif was horrible idk..but ty
I was JCV positive by my monthly blood test and my Neurologist asked what was the test result number? I didn't receive that information but I guess the blood test number can tell how sure one can be with the blood test results. He had a blood test done and the results, although they met the positive result, just barely, and he decided not enough to be considered a true JCV positive. FYI.
Hi yes mine was high enough..
Ok ty
Luvhair, it's Fancy1959. I am JC virus positive was on both tysabri and tecfidera. I had very positive results being on Tysabri, but after about 2 years my JC virus count started to rise. For four consecutive months I had increasing side effects and after month four I took myself off of it because it was scaring me to death. I had a several-month wait but I did get on ocrevus finally and I will have my one year anniversary of being on ocrevus this October. I hope this helps. If you have any other questions for free to write me back. Fancy.
Its been awhile...
Bit of good news 😁😁😁😁😁
