I'm not a newbie to MS though. I was diagnosed in 2002 with RR MS, only one month after experiencing a visual disturbance in one eye, mouth droopiness, and slurred speech. I thought a stroke, and got to the ER right away. After tests in the ER, I was diagnosed with Bell's Palsy and was sent to see my doctor the next day. Thank God for my doctor at that time, because she didn't agree with my diagnoses and sent me for an MRI and spinal tap. Test results had her believe MS and not Bell's Palsy. Unfortunately she moved to another state.
Since then, I found a wonderful new neurologist, who's sister also has MS. He has worked with me on a few drug therapies: Avonex, Copaxone, and then for the last 6 years, Rebif and Ampyra for my walking problems. I was doing well on Rebif, but then began experiencing more and more relapses about a year ago. I was doing the usual IV Solumedrol, that my body never did tolerate well.
Not to write this too long, fast forward to today... I'm now fighting to keep the diagnoses of Secondary Progressive away. I've gone from walking, to walking with the help of a cane, to now having to use a walker. I can walk if I'm holding on to something, but I have to use a wheelchair for long distances.
I've been diagnosed with the JVC virus, but with a low index value. My doctor discussed Tecfidera with me and we decided to give it a try. I'm praying that this new drug can help slow down the progression. I will post back with updates on how I'm doing on Tecfidera and to see how others are doing on it as well. Blessings to all!
Welcome to ThisIsMS, mswobbly.mswobbly wrote:I'm happy to have found this site. I have just started on Tecfidera today, and it's nice to know I can come here for help, advice, and to talk about my experiences with this new treatment..............
I've been diagnosed with the JVC virus, but with a low index value. My doctor discussed Tecfidera with me and we decided to give it a try. I'm praying that this new drug can help slow down the progression. I will post back with updates on how I'm doing on Tecfidera and to see how others are doing on it as well.
I have never used Tecfidera, but I know that, like Tysabri, it brings the risk of PML. Since you are JCV (John Cunningham Virus) positive, it will be very important for your doctor to monitor your virus level REGULARLY.
By the way, if you have not had the vitamin D blood test called "25-hydroxy D," please ask your doctor (GP or neuro) to order it for you (and ask for your own copy of the test results so that you have the actual numbers). Deficient vitamin D levels have been found in people with MS – last year my test revealed that my level was 24 ng/mL, frankly deficient!
The California-based nonprofit, GrassrootsHealth (http://www.GrassrootsHealth.net) recommends a blood level of at least 40-60 ng/mL.
High vitamin D levels have anti-viral activity.