Well I saw the new neuro yesterday and got the most involved exam I've ever received from a neuro. He thought it was a relapse causing the issues with my numb right side since it's been a week since onset. He offered 3 day IV steroids but when I told him what steroids do to my blood sugar levels He decided to write me a script for Tecfidera....anyone else on this drug....what about the side effect called PML? Thankfully it wasn't that hot yesterday so I made it there and back. He also ordered MRI'S of my brain and spine which I scheduled for Sept hoping it will be cooler. I've contacted the company about their zero dollar co pay which I qualify for so that's in the works! But I am not sure I want to risk DEATH by PML!!!! and considering my last MRI showed progression to primary MS is Tecfidera the best med for ME BECAUSE IT'S AN RRMS drug!
Well I saw the new neuro yesterday - My MSAA Community
JC Virus - bloodwork detects whether you have been exposed to the virus if positive they automatically check the levels which will be monitored by more bloodwork. I tested positive it really freaked me out because I hadn't a clue what JCV was. The Neuro at the Cleveland Clinic reassured me and I'm on Copaxone was told Copaxone should not cause any problems with JCV. Please talk to your Neuro double check all information until YOU are satisfied not that any of us are satisfied with having MS. I wish you the very best.
Take Care of You
I have a different opinion of the Cleveland Clinic...I was treated there exclusively for the first 5 years and they did nothing to stop my progression and my opinion is that they are just drug pushers for big pharma and only care about their patients that have good medical insurance and the rest of us they could care less about!
Their research regarding MS is extensive. They have some doctors that actually give a damn and then the doctors that are without a doubt insensitive Bastar** Reading the posts on this site I do realize there are Doctors out there who actually do care about their patients unfortunately where I reside I don't have much to choose from.
I'm wishing/hoping nothing but good or even a little good finds you and stays with you
Do a google search on JCV - John Cunningham Virus. If your blood test is positive, it means somewhere along your life, you have been exposed to the virus and your blood has started to build up antibodies against the virus. When exposed to tecfidera or Tysabri it's possible that you will have a reaction called PML, a brain disease which can lead to your death. Don't mean to scare you, but that's the generalized fact of it. My first neuro was going to put me on Tecfidera and knowing I was JCV+ I declined and eventually changed to a much better doctor.
I was never tested by the Cleveland Clinic for the JV virus. So I questioned my new neuro about this b4 I start Tec and he said he thought it was being OVERLY CAUTIOUS BUT IF I WANTED HE WOULD DO IT! I insisted that I get the test 1st b4 starting this drug!!!! Death is not some kind of a minor side effect....if it was his life on the line I'm sure he would be tested first....grrrrr
I did get the call today that my first shipment of Tec is on the way but I'm not taking it until I am tested first!
Hi dogdaddy I'm JCV+ but very low apparently xxx I'm also on Tysabri infusions every 4 weeks. The centre I go to in England is very good and they watch me and everyone else like hawks so please don't worry hun xxxxx 💕💕💕💕💕
Sorry , didnt mean to confuse yoy dogdaddy, after the JCVirus test, u'll need to be monitored with you white bloid cell count, personally, I would never take any RX's & reason why I'm going all natural, It really seems to be helping along w/Viramins B,A,C,K, & D3 10,000 I.U.'s a day, clorella cracked cell wall, & fruits & veggies & no more dairy (cow) or glutens, & organic chicken, turkey (for proteins), macadamia nuts, almond milk, hemp milk, coconut milk, organic whole goat milk, awesome mix of spirulina, Power packed fruit & veggie, w/millet powders, MSM powder, non-aluminum baking soda & flax seed powder, all pretty much really wrking & plus excersise (Tai chi), walking w/my walker, spacusiity is at a very minimum right now. This is great...❤💜😍🐾🐈❤Many Blessngs to ya!---Jazzy
That's exactly what I've been doing for the past 6 yrs and I keep getting worse and I haven't been on a DMD for almost 3 years since I stopped taking copaxone and ampyra....I take tons of supplements and vitamins to help with auto immune disease too eat totally organic and only grass fed meats and chickens. Eliminated sugar completely , only drink nut milks, etc...
Ih Dog daddy, ggod for yoy! Keep on doing it. ampyra? Wasn't that the one RX they recalled?! I think the web-site says it takes a long, long time to get over it, hete's the wb page i got to learn bout JCVirus, u but look on .healthline.com/health/multi...
Many Blessings to you❤🙏🙏💙💜😍---Jazmine