Follow

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 -

nhs.uk/conditions/multiple-scl

mssociety.org.uk/

msntc.org.uk/

mstrust.org.uk/

@Mandypar As a Fibromyalgia/ChronicPain/Arthritis sufferer, I totally understand. We do say, "I'm fine" though, don't we? It's easier. *hugs*

@homebird Yes - "It's complicated" is never a good answer and most of the time no one really wants to know the truth lol πŸ€— ❀️

@Mandypar Yep, I always feel a cross between, "How long have you got?" and "You really don't want me to bring your day down with my answer!"

@Mandypar one of my best friends (more of a not related little sister really) has MS - relapsing remitting type, but more relapsing atm so she's been having a really hard time of late. Sending gentle hugs and Mayday love XXX

@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! πŸ€—

@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.

@Mandypar
Thanks for sharing, Mandy. I do want to understand MS better. Wishing you the absolute best health possible. πŸ’œ Man. I hope scientists learn more things about MS to help. 😟

@Mandypar thank you for posting this. I hope today is a good day!

@chromogirl today is a good day thanks to my oxygen therapy yesterday (so I get an energy boost). I hope you have a great day!

Sign in to participate in the conversation

CounterSocial is the first Social Network Platform to take a zero-tolerance stance to hostile nations, bot accounts and trolls who are weaponizing OUR social media platforms and freedoms to engage in influence operations against us. And we're here to counter it.