Patients Multiple sclerosis
Topic of the discussion
Posted on 13/03/2020 12:36
Hello dear members,
While the Coronavirus epidemic concerns many across the UK (and Carenity members too), I've created this discussion to allow you to talk specifically about the virus in the context of multiple sclerosis, as we all know that patients can be weakened by their treatments.
Have you received any special instructions from your doctor regarding your care? Are you going to limit your travel? Do you have any advice for others?
Beginning of the discussion - 20/03/2020MS and the Coronavirus - How are you handling the pandemic? https://www.carenity.co.uk/forum/multiple-sclerosis/living-with-multiple-sclerosis/ms-and-the-coronavirus-3069
Posted on 20/03/2020 19:24
Any information regarding ms and taking gilyena as I have been on this treatment since October
Posted on 20/03/2020 22:16
I only take Low Dose Naltrexone for my MS since 2014. I've been signed off from the Hospital since last year because I don't take any of their Drugs still. I was given permission to self isolate from my job at a school this week. Mainly because I am in contact alot with the students and I could catch the virus. This isolation will be hard for me as I have a Daughter living not far away and 3 Grandsons, but can't physically see them . However we have Facetime at least!
Posted on 21/03/2020 16:18
I was diagnosed with MS in 2001. When I was 30 years old I am due to turn 50 in January. My MS is progressing, I am very lucky, I have 2 children, an amazing husband, great family and friend network and a part time job. If anyone is feeling stressed, scared, isolated or uncertain about how you deal with our current challenges, sometimes a chat can help. Please get in touch. Vicki x
Posted on 21/03/2020 16:42
II'm a retired NHS speech and language therapist, so know little about medical practice, only how to be compliant. i've had MS for 36 years, worked for 12 years after my first symptom but thankfully have not worked since. I've never been at a suitable age for treatment or been advised to have any for MS. For my symptoms since retiring I take modafinil whi GPsch keeps me awake all day and amytriptyline which keeps me asleep at night. I live with my spouse / carer who self isolates better than I do. We both receive PIP and he enjoys shopping on his very able legs. Overall I am lucky in every way and enjoy being at home and making a little money using my laptop. I recommend keeping away from the NHS as much as possible.. When you need help try to talk to GPs by phone, be well prepared with questions and know your own medical history.
Posted on 27/03/2020 10:11
@Vixen10000 Hi there Vicky, my name's Clare. I'm 45 was diagnosed in 1998 at the ripe old age of 24 and my MS is also progressing and it has been confirmed by my neuro that it has got to Secondary Progressive stage, hardly surprised! lol
I also have 2 children, well 16 and 18 yr old boys so young men! The Hubby buggered off 4 years ago but i do have 2 sons which are in training to do diy (not that the ex used to do it anyway), put the bins out and shopping so no love lost there.
I do have dark moments obviously but I do try to look on the bright side even if this coronavirus is freaking me out a bit!
Anyway, that's enough, just thought I'd say hi and introduce myself.............take care and stay safe, Clare x
Posted on 27/03/2020 11:25
@Nathan76 @Desertflower @Vixen10000 @Jomarian @clarebear030574 Hello all. I've been self-isolating out of precaution Have any of you received a message from the NHS? The MS Society has a comprehensive page on their site with lots of information and advice. I've been following that since I haven't heard anything yet and I haven't been able to get through to my GP. Stay safe everyone! xx
Posted on 27/03/2020 11:38
@ladymary I got a call yesterday. 12 weeks of isolation is it! How is everyone handling the isolation?
Posted on 28/03/2020 12:47
@Vihi everyone my husbxen10000 and abandoned me almost 4yrs ago. Have 1 daughter 3 grandchildren. Was 24yr old when i started with ms symptoms. Its been 39yrs i now have secondary ms. Met my new boyfriend 4 mths ago hes itallian. Hes brilliant about the ms. I self isolate. Scared to death of this dam virus. Hope your all doing well as expected. I live alone life can be daunting. So have to do everything alone. Enjoy the challenge now. Its surprising what you can do when your all alone. Cheers you guys
Posted on 28/03/2020 17:15
Hi all I'm new to this forum, I have secondary progressive MS, with mobility issues due to my spasticity it my legs. The whole virus issue is a worry, but we carry on regardless.