I've been posting these to my Twitter, Instagram and Facebook, but as it is the last day of the special week I'll post this here:
When you ask me how I am my fine/ok is not the same as your fine/ok - we use different scales. I get brain fog, forget words, get pain in places, and have TN and OAB.
Use the help you can -
@Mandypar Thank you. She has a fantastic consultant and drug therapy under constant review. She's heard she's been accepted for stem cell treatment which is a hard path (6mths isolation!) so hoping that will help her. She was on clinical trial for Campath (Lamtrada) and I think had 3 rounds on the trial and 3 since - it was great for her but I don't think the last one was as efficacious as the earlier ones, hence the rec for stem cells. She's 46 btw. Hope you have a great day too x
@Zailrand I think that the stem cell stuff is a good thing to try and so yes it is hard but it could well stop it. I take Tysabri and have done for about 12 years (and I am JC virus + too) but the risk is very well managed and after a certain time the risk reduces (which is weird).
@Mandypar Just had to Google JC virus. That sounds nasty, clearly just what you need on top of MS :(
I'm really hoping that the stem cell stuff has a +ve outcome. Apparently she's an ideal candidate so fingers crossed...
@Zailrand Most kids have had JC virus and have not realised it (as was the case for me) - the problem is it increases the risk level for me for my DMD. Great news that she is an ideal candidate - I know I'm not.
@Zailrand I hope she can stop that pattern of relapsing as often the damage does not completely reverse. I also hope she is on a good Disease Modifying Drug (DMD) to help stop them. I rarely have relapses now, but I used to get them a lot. I was fine for years, not so much now sadly. Have a great day! 🤗