This morning I went to see my neurologist at the Hopital 15/20 near Bastille here in Paris. We had a chat about all my tests, as well as the symptoms I have been experiencing and am currently experiencing (optical neuritis, balance issues, tingling in extremities, hearing loss and the ever present fatigue).
My neuro then gave me my diagnosis: Multiple Sclerosis.
This wasn’t really a surprise. Having spoken with a couple of friends who have MS, they had mentioned it as a possibility as the symptoms were pretty clear. It had also been mentioned to me as a possibility by hospital staff after my first MRI a few months ago.
My neuro specified that I have the “good MS” and that I RRMS.
So, what now? Tomorrow I’ll be having a lumbar puncture (yuuuuuuuuuuuuuuuuuucccccccccccccccccccckkkkkkkkkkkkkkkkk) and we will soon begin treatment. I do not yet know what treatment I’ll be following or what medication will be prescribed.
I am obviously not happy about it being MS, it sucks. I am, however, relieved to have a diagnosis and to know that steps can now be definitely taken to tackle it and make things as easy as possible. It also helps that my neuro has been treating people with MS for 30+ years. He knows his stuff.
I’m currently riding the high of having a diagnosis and not feeling I’m going crazy and that this is “all in my head”. I reckon I’ll crash at some point later when it finally hits me and will not cope very well for a while. C’est la vie, I guess.
Glad to be here, and reading about the experiences of others is helping. You are all so amazing. <3
Hi Melisende, and welcome to the club you never wanted to join.
As you realise, it is a bit of an emotional rollercoaster after diagnosis. It takes a long time to fully accept it. My first question was - Who do I tell? I would advise taking your time about that and other immediate questions - they are mostly not quite as immediate as you first think. Get used to things, gather as much information as possible, this site and that of the MSTrust are good sources. And, of course, you can always ask questions here on the forum. None of us are Doctors, or neuros (as far as I know) but we can discuss symptoms, treatments, side effects, and anything else that comes along. Whatever bothers you, there will likely be someone around who can empathize with you and maybe pass on useful tips, or talk about chocolate and other important matters.
If you don’t mind me commenting, it does seem a little strange that your neuro is doing a Lumbar Puncture after diagnosis, they are usually done before, as a diagnostic test. Maybe s/he is doing it for completeness, or maybe they do things differently in France, I don’t know.
Thanks so much for your reply. I’ve been very open with those close to me about what’s going on, my appointments, tests and stuff so quite quickly informed them. It’s mostly my family, all of who are in Australia, so they were asking for updates. They’ve all been wonderful, which has helped immensely.
Regarding the LP, I did ask him about that and he said he was doing it for completeness. He knows I am planning on moving to the UK next year and has said he will recommend a neuro for me when that happens and translate/transfer my file, so wants everything to be as thorough as possible so I don’t need to go through any further tests, etc.
Things in France tend to be extremely thorough - I’ve had 6 MRI and a bunch of other tests, blood tests, scans, etc - but all in all it’s taken around 6 months from when I first presented myself to today so, thorough but not as long as it could have taken.
I’ll definitely take your advice on reading as much as possible and I’ve seen the great checklist of questions to ask about DMTs which I’ll definitely be printing out and referring to when we have that discussion. I’m so impressed by this site, organisation and forum.
I am pleased to read that you have a good neurologist, who you trust… That helps enormously.
I have seen 16 neuros, who took an awfully long time to decide if i did have MS or not. They kept changing their minds and that really messed with my head!
That was why I had mine as well - the neurologist said he liked to have a complete baseline picture on file at the time of dx. He wasn’t expecting any surprises from the LP, and there weren’t any. I took the view that, if a person is going to get an MS dx, it might as well be good and secure! I think this applies with bells on to a person who is, as in your own case, planning to move country.
I am sorry that all this trouble has come to your door.
Thank you for your reply, Carole. I really appreciate you taking the time to respond.
My neuro told me very clearly I was entitled to decline the LP and asked if I was ok with it. I told him “no, but let’s get this done”. It’s now the day after and I’ve been lying in bed all day. OMG the headache. Ugh. But, it’s done now, so there’s that.
Firstly, thank you so much for taking the time to reply.
I got the LP done yesterday and shall see my neuro in a couple of weeks when I am back in France. Part of me hopes something does come up so it makes this awful headache worth it (in a way). I agree with his rationale and it made me feel a lot better to know how thorough he wanted to be. Don’t feel like I’m on a conveyer belt with him at all, which is super reassuring.
I hope your Friday night is wonderful and that your weekend is full of fabulous things, love and smiles.
Happy Friday, Polly! Thank you so much for your reply. It is very much appreciated.
I first presented at the ER in June (when I had the optical neuritis), so all in all it’s taken 5 months. I’m told this is quite remarkable and I am so grateful for the response I received. I think it was lucky that I went to the hospital in Paris that specialises in eye and neurological conditions. They sped me through ER and within two hours I was having my first MRI.
I am so sorry you went through such a horrendously long diagnosis period - that must have been incredibly stressful and emotionally painful for you. I also hope that you now have the support you need.
I think this diagnosis is finally catching up with me. I know it’s not the end of the world, and I know there are people with far worse things going on in their lives but, [removed by moderator].
I’m scared. I’m relieved. I’m tired. I’m hurting. I’m worried. I feel sick. I’m happy I know what this is. I’m really [removed by moderator] confused and I’m terrified.
Biggest thing on my mind right now is everyone close to me - I don’t want them to worry. I don’t want people to be scared for me. So, I’m telling them everything is fine. You know what? For the most part it is? This is something I can [removed by moderator] deal with and I think I am dealing with it and I know I will deal with it but, at the same time, I almost want to just collapse and wallow and feel sorry for myself and cry and have people comfort me. But, when I start thinking like that (or, right now, while I’m typing this) I get disgusted with myself and start internally shouting “snap the [removed by moderator] out of it, woman”.
Is this normal? Stage whatevernumber of coping with such news?
Normal? F*** yes! Don’t try to aim for the ‘right’ way of dealing with the tough stuff you are dealing with just now: there isn’t one. So don’t beat yourself up for doing it the ‘wrong’ way because there isn’t one of those either. Just hang on in there - it will get better.
You describe what I am going through so well…riding the initial high of getting the diagnosis of MS (I’m not nuts) to crashing into an emotional wreck, confused, frightened and questions on how I’m going to deal with it with other people.
I am still in the train wreck phase, crying everyday and feeling helpless (4 months after diagnosis), I don’t recognise myself in the mirror and its like I’ve forgotten to have fun and smile. After diagnosis can be a very dark, lonely place and forums like this and local groups provide a support if you let them in.
That said, I do now see light, kindness of people, simple support they can offer, I’m beginning to appreciate things I can still do rather than dwell and grieve for the things I can’t.
So telling yourself to ‘snap the **** out of it’ is part of the process as is all the feelings you are feeling. Acceptance is the hardest for me (and people being so kind).
Ride and own that emotional roller coaster, it gets less emotionally and psycologically bumpy the further down the track you get.
Welcome to the club and best of luck with your journey,
