• I’ve had MS for 13 years and all I hear is that I should be happy about this or grateful about that. Quite frankly, after so many doctors and let downs and “friends ” who really don’t want to know and just say “take care of yourself” or ” Call me when you feel better”. I’ve lost all friendships and am completely isolated except for going to…[Read more]

  • Lola Dean's profile was updated 1 year, 7 months ago

  • Lola Dean replied to the topic Comorbidity in the forum Newly Diagnosed 1 year, 7 months ago

    Hi Chris, I developed degenerative bone disease and glaucoma. I find that doctors are very tunnel visioned so I have to educate each one one about my comobidities. I tend to find a doctor and network and stay there so that the history is all in one place. I hate changing doctors but when you don’t have a good fit, it’s really important to find a…[Read more]

  • My state is still only vaccinating healthcare workers. I signed up but waiting. The folks I’ve spoken to say the second shot is a bit tougher than the first. If and when I can get it, my first shot will be in my dominant arm and the second in the non dominant side. Good luck!

  • Yay! Love avocados and eat them all the time. I would love fresh coconut water to be on the list.

  • Lola Dean posted an update 1 year, 7 months ago

    Ed, I forgot to ask how they monitor you to catch PML before it wreaks its havoc? Also, I read about an antiviral ( something lambda) that can strengthen the BBB which would prevent migration of of the JCV into the brain. Do you know anything about that?

    • Lola,

      I had brain MRIs ever six month to look for a shadow that, apparently, is an early sign of PML infection. I also had regular blood tests (I think they were also twice a year) to monitor my JVC titer. The higher the titer the more concern there is about developing PML. When it rose to a certain level I changed meds from Tysabri to…

      [Read more]

  • Lola Dean posted an update 1 year, 7 months ago

    John and Ed, thank you for the welcome. Ed, It’s reassuring to know that I can go on an anti CD20 with A positive JCV titer. Apparently, patients here are starting to experience a noticeable decline at the 4 month mark (in between infusions every 6 months) so I was also offered Kesimpa (the new antiCD20 that the FDA fast tracked approved a few…[Read more]

  • Lola Dean became a registered member 1 year, 7 months ago

    • Hi Lola,
      Welcome – loads of info, research & experiences on here.
      You can also start topics – my fellow
      moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
      Cheers John
      PS Phew, your health problems are far beyond my knowledge but pretty sure u can have a DMT despite your JCV status. My fellow Moderator, Ed, is far more cl…

      [Read more]

    • Hi Lola,

      Let me add my welcome to John’s.

      I’ve been living with MS since 1980 and have been treated with Avonex, Tysabri, Aubagio and finally Lemtrada.

      Like you, I’m JCV+ and most people are! Even so, I used Tysabri, the DMT with the most concern for PML, for about seven years without any PML problem. With careful monitoring PML can…

      [Read more]

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