So I wondered, do you think we’ll get 1 of these, either a letter, or text message telling us to self isolate for 12wks, Boris has said, letter’s or text’s will be going out in the next couple of day’s to certain people, elderly and vulnerable and we’re vulnerable, I know we’ve already been told to socially isolate, but not self isolate, well that’s at least what I think, if anyone knows any different please let me know,
Thanks Jean
P.S. if we do, where do you think they’ll come from, GP, or MS nurse
I’m currently working from home was told by my employer last week to do so as ms was on the vulnerable list. But today it’s not on new list being spoken about. So am I still vulnerable or not. I’m have progressive ms, but work part time as a social worker for older people. Normally I’ve a calm relaxed person but this uncertainty is freaking me out. I’m worried about leaving house which till now I didn’t have to do but now I’m not on latest list will my work expect me back. I get I probably wont get any answer here but it’s good to vent I feel
personally i think us with ms should be isolating ourselves anyway, if at all possible. its going to be hard for some but in the grand scheme of things its a no brainier to me.
The only people that will be told to isolate for 12 weeks are people with cancer who are undergoing active chemo or radiotherapy,people with blood cancers ,cystic fibrosis, or severe asthma, and people with severe kidney disease,people with an organ transplant,and a bad heart disease.These are the only ones getting a letter from NHS or there drs.Us with MS just need to follow the guidance on social distancing on the gov.uk site.I found all this out on the gov.uk site its there for all to see.Its quite confusing bur there are 2 groups and we are in the first group.The 2nd group is the people i mentioned who will be getting a letter from there dr or nhs my brother in law being one of them.I worried my family sick as i was told on here that we all had to self isolate for 12 week when we dont.I will not be going out and i will avoid as many people as i can like we all should.Hope this clears things up as i have been really confused all week.The statement today by Boris made this clear as mud but its all the people i mentioned who will be getting letters.
Theres been a lot of confusion this week on here about what we have to do I was told we had to self isolate for 12 week we dont though ,we have to follow the guidance on social distancing which you can find on gov.uk us with MS are in the first group there is a 2nd group of people with a much higher risk than us with MS.They will be getting a letter this week to tell them what to do.We are at risk having MS but not as greater risk as some with cancer and copd.I am just going to avoid going out and avoid as much face to face contact and keep my distance from people like it says we have to.
I think for me I will self isolate, why risk it, last year I had a chest infection and cold and believe me when I say I was bed ridden and I don’t what to risk that again, I have progressive MS, just be mindful, if we all do out bit this will go away, if not it’ll stick around.
I never go out anyway so i self isolate anyway most of the time.Know what you mean if i get any infection im stuck in bed for weeks,When i get tonsilitis or flu i cant stand up.If i get this virus i think it will kill me as i am so weak after having MS for 28 yr.
Hi bouds, I wish people would stop panic buying, their so bloody greedy, it broke my heart when I saw that nurse on the news crying, it’s just awful. Jean x
Going to self isolate but am a bit worried. Have had TB, Pneumonia, Sepsis and E. coli over the past two years so don’t think my lungs will be in the best condition to fight this. Fingers crossed.
this was shared on Facebook forum earlier. It’s just so confusing; this suggests that people with MS that are on DMT’s that are in any way immune suppressive means they will be in the new list too? I think…
The new list doesn’t include over 70s at all. It could be concluded, the over 70s, and the people with MS, Motor neurone disease and Parkinson’s that were specifically named already, didn’t need this new, secondary, more specific list.
i’m on Tefidera, and cannot work from home properly, so as MS is specifically named on the vulnerable list, I’m going to ask my employer whether I can have it as disability leave, rather than count towards my sick pay. Worth a shot?
I think the specially vulnerable group will include people who’ve been on medication which is an immune suppressant. For example, some disease modifying drugs are immunosuppressants (Eg Ocrevus), also other drugs like Methotrexate (for RA or Psoriasis perhaps). This means their immune system isn’t as effective at fighting viruses and infections.
Those of us with MS who have not taken an immunosuppressive drug have super charged immune systems in most cases. The point about autoimmune diseases in general is that our immune system attacks our own healthy tissue. The immune cells treat healthy tissue as alien invaders and damage it. In our case the myelin, which should protect the nerves. When a virus or infection enters the system, our immune cells fight the invasion but get carried away and also beat up our otherwise healthy myelin.
Think about what happens when one of us get a UTI. This can lead to weaker legs, brain fog, exacerbation of existing symptoms or new MS type symptoms.
So if we get Covid19 (aka Coronavirus), our immune system is likely to overreact and give us worsened MS symptoms as well as the virus. But, as we do have an immune system to fight the virus, it (probably) won’t kill us. Wheras for someone with certain type of cancer, or severely depleted immune systems, it might.
So people with MS won’t be automatically included in the exceptionally vulnerable group. Although with MS we should probably take extra care to socially distance ourselves from others. This is different to self isolation. It means staying home, avoiding other people, taking all precautions against the virus, but not the extreme steps that self isolation requires.
In other words, we may be vulnerable (take extra care), but not VULNERABLE (stay away from every one, even those you live with).
My employer sent me home last week as they consider anyone with MS vulnerable.
They felt that it didnt matter if I was on DMT’s or not.
In their opinion If I did pick up the virus it could have a knock on effect with my MS symptoms which could put me at risk whilst at work, ie mobility, balance ect.
I’ve just looked at the .Gov site and MS is still listed as vulnerable, no mention of DMT’s.
People with MS but not on DMT’s are still classed as vulnerable but for slightly different reasons to someone with MS but taking DMT’s.
As Sue said, if your not on DMT’s chances are your immune system is hyper and looking for a fight at every opitunity, but in that fight it will also attack normal nerve cells, and then throw your MS in melt down, not good !
Just before Xmas I caught a run of the mill stomach virus, it was a nightmare, but my MS symptoms were even worse, I dread to think what it would be like if I caught the coronavirus.