Just wondered if anyone has been newly diagnosed. Got a phone call this week from my neurologist and I’m still in shock and also getting constant texts about being high risk to Coronavirus. Very confused
Hi Levi,
I was diagnosed in 1991 and this stuff still confuses me. As I understand it, MS is a disease of the immune system, so yours and mine are different from many others (and likely to not be as good as someone without MS) which makes us a bit more vulnerable to illness. I have read that in some circumstances COVID-19 can also impact our immune systems, therefore we are at risk. A huge number of people without MS or any nasty conditions as well as all of us with nasty conditions are also “at risk” I do not think this means that we are all at imminent risk of massive problems. I think that you should try and process your diagnosis by breaking it into smaller bits and prioritise any immediate or big issues. With regard to COVID-19, do your best to reduce chances of catching or sharing it by keeping yourself to yourself if you can. It may be decades since my own diagnosis, but I do remember how I felt. You have a lot to get your head around but you will be amazed by just how adaptable you can become.
These threads on this forum are valuable resources of experience and empathy.
All the best Mick
Hello Levi
Commiserations on your new diagnosis. It’s a lot to take in, and to hear it over the phone due to the current Covid crisis is harder to process than the way the majority of us were diagnosed (in person!)
My understanding of the immune system and it’s relation to MS is a bit different to what you’ve gathered and from Micks info too. That’s not to say I’m right and Mick’s wrong, we are all amateurs here (with a few exceptions) so take everything you read on a public forum with a pinch of salt! In addition, try to avoid consulting Dr Google, stick to reliable sources such as using the ‘About MS’ button at the top of this page or look at https://www.mstrust.org.uk/about-ms/what-ms
I think our immune systems actually work very differently from other people’s. MS is an Autoimmune disease. This means that while the proper job of your immune system is to ‘kill’ off enemy invaders (bacteria, viruses and infections), the immune cells in a person with an autoimmune disease actually have a tendency to attack healthy tissue. So someone with (for eg) autoimmune liver disease might find their immune system attacks the liver which means it can’t do its job properly.
In MS, the immune cells attack the myelin; this is the coating which covers the nerves (central nervous system generally) which means the nerves get screwed up signals from the brain. The immune system is frequently stirred into action when we come into contact with an infection or a virus. So many people with MS don’t often get bad colds, the virus just makes their MS systems worse than usual.
Our MS works differently from person to person. In addition, while about 85% of us have a ‘relapsing remitting’ MS variant, others have a ‘progressive’ type. So while some have relapses when their symptoms flare up, then recover either partially or completely, others have an ongoing decline of neurological function. This can be faster or slower depending on the individual.
It ought to mean that if an MSer comes into contact with Coronavirus, we might be more likely to experience a mild form of Covid19 plus a worsening of MS symptoms, rather than a severe form of Covid19. Although as I said earlier, we are all so different, that it may not be true for all of us.
What might have confused you a bit is the text message that everyone got. By ‘everyone’, I don’t mean everyone with MS, or even with an autoimmune disease, but the mobile phone companies cooperated with the government to send everyone a text that started ‘GOV.UK CORONAVIRUS ALERT’. This text confused us all. I assumed (like you and almost everyone else) initially that it meant we were more at risk than most of the population. Then you find that healthy people got the same text!! Upsetting and annoying, it could have been worded better for those of us with existing conditions.
I expect that at some point you’ll be contacted by an MS nurse who should be able to try and support you during this period over the phone if not in person. If you aren’t, try phoning your neurologists secretary and asking for the contact details of your MS nurse. Or you could try the MS Society’s Helpline, the number is at the bottom of the page (0808 800 8000).
Meanwhile, those of us who haunt this forum will try to help if we can. Try not to worry about your diagnosis. The chances are you will be disability free for many years, if not for good, with the help of the many drugs that are now available to stave off MS relapses.
Good luck, keep following the governments guidance about Coronavirus and stay safe.
Sue
2 Likes
Hi Levi, so now you know what you`re dealing with, you can start to accept it and begin.
You will still be you, but with extras…like many people diagnosed with serious conditions.
It does vary person to person …even within the various types of MS ie RR…remitting relapsing…SP secondary progressive and PP primary progressive.
Medication will probably depend on what type you have and if you fit certain criteria.
Appointments will be changed due to the covid virus, so phonecalls to your neuro or MS Nurse may replace face to face ones.
Building good support networks and pacing your activities will help you cope.
Are you still in work? That too will benefit from colleagues giving you reasonable support.
We`re here to support you too.
Boudsx
Thanks Sue
Your knowledge, experience and clarity of explanation are one of the reasons I love this place.
Mick
Hi, Levi, and welcome to the forum! Ssssue has explained it all wonderfully well, so I’ve nothing to add there. However, I really sympathise with how you’re feeling at the moment, especially having had your diagnosis given to you over the 'phone. I was diagnosed in June of last year, and I can still remember exactly how I felt to hear those words ‘yes, you have MS’. At the time, it felt as though a guillotine had just fallen on me! Shock, anger, guilt, denial … all these are totally normal reactions, so don’t beat yourself up if you experience any or all of these emotions. Most of us have been there, believe me.
At the end of the day, you are still the same person you were seconds before receiving your diagnosis, except that they’ve stuck a label on your illness. As others have said before me, MS affects each of us in a different way, but the danger is to try to predict the future (and Dr. Google is a dangerous place to go). I guess it’s human nature to want to find out the worst case scenario but, as nothing is certain with this illness, that road can only lead to worthless stress and fear about things that may not happen anyway.
My own trick is to focus on the ‘now’ rather than the uncertainties of the future. Leave the crystal ball behind and enjoy life as it comes, welcoming it with open arms. It ain’t always easy, and don’t I know it, but for me it’s the only way forward.
Remember that we’re all here for you, and there’s always someone on this forum who can relate to any problems you may encounter. That’s what we do!
Sending you loads hugs. xxx
Just to add, on the subject of the texts, if they worry you there is a bit at the bottom saying you can text Stop and then you won’t get anymore. I can understand it all being too much at the moment. Wishing you all the best.
Hi Sue, I’m glad I wasn’t the only one confused and made anxious by the text last week. You always seem quite level headed so it’s reassuring to know that my feelings weren’t an over reaction.