Well finally after my lumbar puncture in early OCT I now have my results due to a delay in administration.
I am now an official member of the RRMS club, Lucky me !
In a way I am relieved as I have the symptoms and at least with the official diagnosis I will be able to start on some treatment. Unfortunately every time they check something out they seem to find another issue that needs looking into. Kidney, Liver etc luckily all has turned out to be ok. I have a kidney issue but they don’t seem too concerned luckily.
The next step will be a meeting of the consultants to agree on a DMT and further blood tests that will be required. To be honest I have had that many blood tests on this journey I don’t know what else they can test for. but never mind it’s all part of the process I guess.
I have requested Kesimpta and my consultant also suggested the same but we will see what they decide at the meeting.
I am now officially MS. I didn’t even get a sticker for being a brave little soldier.
Not even a badge.
Never mind !
Best wishes to all.
Never great news to get, even when one had a fair idea which way things were heading. These are choppy waters that you’re navigating, and I for one didn’t find those early months easy in any way. If you find yourself feeling at sea, don’t worry: it’s not that you’re doing anything wrong, it’s just hard work.
Good luck with it all.
It’s a strange club to be a member of😊 getting the diagnosis is good though, because at least it means you can start doing something about it. Hopefully you’ll be starting the new treatment pretty soon in the New Year, good luck with it!
I found the first few months a bit weird, I think the problem was I didn’t look any different and didn’t really know how to behave different so it felt a bit fraudulent to feel depressed about it, and I think just processing it takes a long time. I remember being in work the day after I was diagnosed and a woman who had been my boss in a previous role got in a lift with me and asked how I was. I just looked at her and said I’m okay, I was diagnosed with MS yesterday. She went as white as a sheet and nearly collapsed, and was terribly upset about it. Hadn’t really occurred to me that it was that big a deal, but I suppose I’d been sort of expecting it for a few months. Eventually I realised that if I was in a group of people and felt the need for attention, I could just subtly drop in that I had MS and I’d be the centre of attention. Needy? Me?!
I think that deciding who to tell and when to tell them Will be the next tricky decision for you. I told my employer fairly early on, but they were bloody good and I knew they would be, but it can be quite complicated for some people. You don’t have to tell your employer, don’t forget.
Take care
I never got the official result of my LP, I was just told MSers usually have a higher content of T-cells in their spinal fluid, which an indicator of multiple sclerosis.
I have to admit though, I’ve never had a blood test in order to dx my MS.
I believe there are sources online if you do a search then you can obtain a badge/card/lanyard to signifying that you have multiple sclerosis, I don’t have that one but, I do have a public transport “Please offer me a seat” badge and card.
Regards,
JP
Subject: Thinking About You
Hi Dave,
I hope you’re doing well, or at least as well as you can right now. I’ve been thinking about you and wanted to check in because I sense you might be going through a tough time.
If you ever feel like you need a safe space to reset and focus on yourself, I wanted to share something that’s helped others: Shock&Shape Studio. It’s a place that blends fitness, movement, and energy in a way that not only strengthens your body but uplifts your spirit.
I’d like to share some information about EMS training (Electrical Muscle Stimulation), which can provide real benefits for people living with multiple sclerosis (MS).
I believe in the power of small steps, and sometimes the right environment can make all the difference. If this resonates with you, I’d be happy to share more or even join you for a session.
Take care of yourself, and remember, you’re not alone.
Warmly,
Robert