Helen SD

@ThePOTSPostman “I’m sorry”

Friendly reminder, when someone is discussing their chronic illness with you, try to avoid saying the following. “It could be worse” “That doesn’t sound so bad” “I know someone with that and they are fine” “At least it’s not fatal” What else do you hate hearing?

@PrincessMS23 Heartbreaking, i’m so sorry to hear this. Many condolences you and your family.

@ReneaLynnMN Sorry to hear you’re having such a tough time. I had a similar experience and ditched Ocrevus. It’s been a more than a year since my last infusion and everything has significantly improved. I started cladribine in Feb and it’s been uneventful so far.

I went from being able to work out consistently to not...for months! Not even a walk up the street! I tried. It's not for me. Now it will take 6-7 months to recover! ☹️

I'm tapping out! This was my last #ocrevus infusion. I went from "not so bad" to suffering through it. It's been a week and it's absolutely terrible! I do much better when I'm focused on nutrition and fitness. I feel better, I'm happier... I can function! #thisisms

@SuebeeTexan If it wasn’t so awful, the way symptoms vary from person to person is fascinating. The lack of feeling though must be quite disconcerting. My husband often comments on my ‘ridiculously hot’ showers, so I wonder if there’s something in that.

@HelenSmithDrew Yes. I get this. I've felt real rain drops on skin outside + not realized it was actually raining. I've learned to ck odd skin sensations to make sure I'm not too close to a heat source or sharp object. MS gremlins for sure!

@cynsagi I occasionally experience something similar, but only fleetingly. I’m sorry to hear it can drag on for you. I hope it’s not a regular symptom?!

@HelenSmithDrew I get that too- it is so strange. I also get a weird burning, like a menthol on the back of my neck and then horrible neck pain within a few hours. Such an odd disease!

@mngonewild It’s crazy how transient symptoms can be.

@HelenSmithDrew It’s only happened two or three times for me since my DX in 2017 but on those occasions, it felt like I had bugs scrolling on my face and head. I know different, but out of the blue, and never have had that sensation before. Good luck, my friend. #PPMS

@PrincessMS23 The best place to be!

@MikeKnight121 Thank you. He’s so friendly and playful, the rescue centre have done wonders with him. It’s very exciting 😊

@AdamHighcliffe This is vile. Not my proudest moment, but I sent my daughter to school poorly. We had already been called in for “attendance issues” (covid 🙄). She got through the day. By the eve she was in hospital on a ventilator. My kids are now EHE.

Schools from the United Learning group are forcing parents & pupils to sign an Attendance contract with their local school. The terms include the commitment that kids will attend school "even if you feel unwell". Parents were informed just yesterday and are said to be furious. 🧵

@PrincessMS23 Sounds like she’s chosen her person. Lovely to see her looking so relaxed so soon!

@GlennHampson Sorry to read. I hope you feel better soon! If ocrevus is generally working well, maybe Kesimpta is worth a try?

@cynsagi I’m optimistic. I hope you have a similar experience!

@HelenSmithDrew Really good to hear! I am starting Cladribine soon so I am glad to hear people's experiences so far!

@katesmith1674 Oh no, how scary. How are you feeling now?

@katesmith1674 Sorry to you’re having a rubbish day.

@RachelHorne19 @KU_Leuven @PLOSDigiHealth I’ve already asked Chatgpt the question. Unsurprisingly, it referred me back to the neurologist 😆 so, yes. I would want to know.

Say a machine-learning model cld reliably predict your MS disability progression over the next 2 years? Would you want to know - re future plans/choice of treatments etc? De Brouwer & team from @KU_Leuven used data from 15,240 adults with MS from 40 countries. @PLOSDigiHealth

@jackolinemartin My hubs and I were in Exeter at the weekend and were taken back by the levels of blatant drug abuse etc. It’s really sad.

@GlennHampson Thank you, that’s really kind of you to say.

@MikeKnight121 Thanks. It’s a brave new world!

@RachelHorne19 Thank you. It’s a positive step in the right direction and it opens the door to new connections.

@HelenSmithDrew Sending you all the best! So pleased you made the decision when it felt right for you!

@GlennHampson That’s fantastic to hear! It pains me to think of how much talent is sidelined due to a lack of flexibility (and imagination) within the workplace. In time, I would love to provide a type of mentorship for those who like to dip their toes into self-employment.