Had lumbar puncture Friday and am expecting to be diagnosed at next appointment based on previous tests. Think LP was just to confirm it really.
Any advice on who (or who not) to tell and how? Been on my mind a lot. Part of me wants to just tell everyone and get it over with but I’m very aware that once I do that there’s no going back. Another part of me only wants to tell a few people, in the hope of maintaining a bit more normality. I quite like the idea of being able to still have social interactions that don’t have to begin with an update of ‘how I am’ if you know what I mean.
Would love to hear people’s thoughts on what worked for them. In particular was there anyone who you told and wished you hadn’t or vice versa anyone you didn’t tell and then wished you’d let know sooner.
I must admit I told everyone at first reasonable opportunity. I didn’t force an opening but if something cropped up I told people. This was October 2017 when I received my PPMS diagnosis at the age of 66 and so far I’ve had no problems. People don’t seem to need constant updates. They accept me for who I am and what I’m doing. I’m still pretty mobile although I do use sticks on rough ground or if I’m planning on going 2 miles plus. Everyone is very understanding and if I say I need a bit of a rest they’re fine with that. Just do what feels right for you. Everyone is different - and that goes for your friends and family too!
Hi charl84, go with your instincts. If you think you might regret telling someone then hold back. I told everyone as I was reaching out for info plus I was incommunicado having been in hospital for almost 3 months at the start and during covid-19. I don’t regret my decision to tell and I’m using that decision now to write a blog on Instagram. This creates awareness, let’s nosey Parker friends have an update as well as good friends who don’t want to text/call (you know the type that just don’t know what to say). It’s not for everyone though but it actually helps me. I feel it helps me too with the people I might have regretted telling as they can get the update too from Instagram. As I said go with how you feel, don’t tell everyone/anyone unless you are ready ! Hope this helps. D
Hi, maybe my own situation was a bit different. I was in a wheelchair within a very short time of starting problems, so naturally folk wanted to know how I was/what happened/did you have an accident?
I still looked the same, my sense of humour prevailed and still has after 22 years!
I went through an undiagnosed period and it was hard explaining what was going on but since I got the MS diagnosis, it is so much easier to say Oh its MS`…end of questions for most folk!
As for you telling anyone/everyone…just go with your gut feelings on the day.
Well, just for myself - I told those who absolutely had to know or should know (family/close friends/DVLA/work management - but for everyone else, it’s none of their damned business! So tell them what and when you feel comfortable telling them.
Thanks so much everyone, really appreciate the responses. Lots to think about. Have my next appointment on 24th when we’ll be talking through the lumbar puncture result etc - was surprised it wasn’t sooner I was expecting it before then. Just want to get on with it now really. Had psyched myself up and now feels like a long wait xxx
Hey, I’ve been toying with the idea of doing something similar Instagram-wise. If I do would love to follow your blog if you’re happy to share what it’s called?
Am still waiting for first appt… Already starting to tell friends what i suspect, but think thats because i need to maybe hear myself say it out loud. Usually leads to them saying all the ‘dont be daft’ right things but then i ask them…well whats causing x y or z then.
Good luck with everything. I’m slightly different from most of the others on telling folk, I told my father and wish I hadn’t as he uses it as an excuse to stop me from helping him out about the house and garden when I’d rather he let me do it instead of him paying someone. I also told the person who was meant to be my best friend, she listened at the time but I’ve not seen or heard from her since, I suggested coffee, visits etc but she always was too busy so I decided to wait for her to suggest something, I’m still waiting, that was 6 years ago!! I’ve told family as MS seems to run in ours and I felt they should be aware of it but no one else. Hopefully you have better friends than me!!
Hi LucyAnnie, that is awful, I’m sorry to hear you were treated like that by your friend.
charl84, I’m on Insta [removed by Moderator. Please contact by PM] Not sure which you search for but you should find me there. Welcome to follow. It’s nothing special, just keeps my interest. See what you think. Is your Insta name similar to your name here so I can follow you back? D
Sorry about your ‘friend’ LucieAnnie - totally agree that karma will come back to bite her one day. You’re better off without that one in your life for sure!
Deescout123 - I need to set up an Instagram! I must be one of the last 30 something year olds in the country without one - haha. But when I do will be sure to let you know the name so we can follow each other. I’ve been looking into OMS and finding it inspiring. Giving me some hope that we can all have some control over things to come x
I received my diagnosis on Tuesday of MS, following my lumbar puncture 2 weeks ago, which showed oligoclonal bands. I have told everyone who “needs” to know and those friends who knew I was going through the process.
I personally wouldn’t do anything on social media; it’s not the medium at ALL in my opinion. Being diagnosed is a really major life event and I think things like Facebook and Instagram minimise it and turn it into a bit of a performance (I love and use both but that’s just my opinion!).
I think you might benefit from working through how you are going to feel if you tested negative. I feel like you are convinced a diagnosis is coming but right up until the second my consultant said “so we’ve had the results of the…” I was telling myself it would go either way and I had to accept whichever way it swung.
It is possible they’ve got those results already and would have shared over the phone, however my Neuro said it would be nice to do it in person but…Covid etc.
I’d prepare mentally for both outcomes…and I honestly wouldn’t even consider other people before you’ve made peace with whichever is coming…I hope that makes sense…
I have to say from some of the experiences here my diagnosis earlier this year was a much more gradual affair, although I think the Neurology dept weren’t initially looking for MS but other Neuropathy. Anyway as for telling people I took the decision to tell my immediate family and close friends as well as a few others who needed to know, immediate supervisors at at work, personal trainers that sort of thing. One thing I would be prepared for though is for you to be doing some of the comforting of others. As bizarre as it may seem, I spent that first weekend scraping other people off the ceiling and trying to calm them down. It still strikes me as odd that I had to do that 7 months later.
I did take the decision this week to tell the HR department where I work and to be a bit more open with other people. There are a number of reason why but they include the fact that people will notice that my walking is much more awkward than it was so it will be obvious that something is wrong and also that I won’t be going back to the office any time soon as I’m likely going to start my initial steroid treatment; no immune system means no office as far as I’m concerned. The fact is that people are going to speculate that something is wrong and I’d rather they knew the facts. I’ve also come to terms with the fact that this diagnosis isn’t my fault and I have nothing to be ashamed of (none of us do) so why hide it.
Ultimately though this is your decision who you tell and who you don’t tell, assuming that MS is the diagnosis, and whatever you choose it will the right thing.
Thank you both for your responses and sorry you’ve had to go through all this this year. There’s never going to be a good time to be diagnosed with ms but in the midst of Covid is a particularly bad one!
i completely agree with what you’ve said, neurochick, and you’re right I have not prepared at all for a negative LP result. Bizarrely I think that might be the more devestating outcome because I know my body and what it’s doing and if I can’t prove it that is going to be extremely hard to deal with. I already feel like a sitting duck as my first symptoms were years ago so I just want to get on with some sort of treatment now before any further damage is done.
I think I will start with people close to me when it comes to telling people. I had a friend over yesterday that I hadn’t seen since before lockdown and just telling her was a huge relief. Not in the least because she was awesome about it and totally calm and level headed. I dread the dramatic reactions like you said you experienced Patten and think I’d find it really hard to handle. like you I expect at work it’ll be easier to just tell everyone. I’d prefer to do that I think than have people speculating. Plus trying to keep anything private at my work is…hard!
I really understand where you are coming from. Can I ask, are you still in the private system and had the LP via that? Or are you back in the NHS now? I have heard that actual disease modifying treatment funding is via NHS so if you do get diagnosed, and referred back to them, you might have to swallow whichever re-testing they want you to do (this is only what i’ve read on other forums btw).
I was also asked when I had my LP if it was my first one, and told I might need another “to start treatment”. I guess there was a clue there as the doctor who performed it is a Neurologist and would have seen the referring report. But I decided not to read too much into that!
There isn’t a “burden of proof” on you to make people believe you have MS. Nobody wants to hear “science” in a sentence anymore do they but the diagnostic tests really are the best “proof” along with symptom history. Demyelination is the key issue here isn’t it. Not everyone has the oligoclonal bands I know but if there is inflammation in the central nervous system then those antibodies will be present in the CSF about 90% of the time (again, stats I’ve learned). Size and shape of the lesions is also a big factor, not just where they sit in the white matter.
What helped me enormously, and I’d really recommend it to you massively, is (not sure i’m allowed to say it on another forum) but there is a FBook group called “MS UK”. That exact title. I joined around a month ago and read every single permutation of diagnosis, non diagnosis, symptoms, the lot.
I posted loads, and I got almost instant responses. As do all the members really. I think you would find it so helpful and eye opening. Arm yourself with tons of questions about the differentials IF, you get told it isn’t MS. Just like you’d have lots of questions if you are told it is. I was fully ready to hit them with, so what now? Please tell me the plan of action going forward with my symptoms now I don’t have MS.
If you ARE in the private system, I’d be pushing for the appointment now, not on the 24th? They’re making you wait and then will potentially charge you for that appointment. Surely they can ring you with the results of the LP and then it’s down to you wether you want to pay that money to hear more in person, or re-refer to the NHS for free.
Thanks so much for all the advice. Really is appreciated. I will definitely have a look at the Facebook group.
I did have the LP done privately but there is a big NHS overlap - it was actually done in the main NHS hospital and then there is a smaller private one attached where I was taken after the procedure. My consultant works at both hospitals seeing both private and NHS patients so I’m hoping that will mean I won’t need to re-prove anything to the NHS as he works for both anyway.
Either way one thing I do know for sure is that I will never, ever, ever have a LP again! I don’t care how much they say it’s needed. I coped really well on the day, needles really don’t bother me, but I have had the most excruciating headaches since. Like 10/10 pain wise and unlike any headache I’ve had before in my life. If I’d had any idea what the recovery would be like I’d never have agreed to it in the first place. I have seen a doctor by the way since before anyone worries and they’ve said I’m ok to just keep recovering at home for now but come back if they don’t improve. I’m a bit confused as to why he hasn’t already diagnosed me to be honest, the evidence is there already. I feel a bit like he’s done this just because it’s the normal next step rather than because it was absolutely necessary. Probably being a bit harsh but I’m just so fed up with the headaches.
It’s our first day of a UK holiday today and I’ll be so mad if these headaches keep coming for the rest of this week too. The last thing I want to be doing on holiday is trying to contact a doctor! I really wanted a week off thinking about it all (another reason why I didn’t push for a sooner appointment than the 24th). I was surprised too that it’s that far away but his secretary has actually tagged me onto the end of a day as she said his first actual availability wasn’t until September!
Anyway, thanks again. I will definitely make sure I have a plan of what to say/ask whichever way the results go. It’s quite nice in a way that it’s going to be a telephone appointment. I was offered to see him in person but said actually I’d rather a call as then my husband can listen too. I want the moral support and he wouldn’t be allowed to come with me in person at the moment.