I’ve been floating around on the forum for the last few months while waiting for a diagnosis.
I had an episode of optic neuritis in my left eye about 4 years ago which I luckily made a full recovery from after being hospitalised and pumped full of steroids. All then seemed to be OK until April this year when I started to get extremely tired, pain in my neck and the feeling as though someone had tied weights to my legs when I tried to get up and walk about.
I do have a very stressful job and had stupidly neen working 12 hour days so I just put it down to that. However when this didnt get any better I went to see my GP and he referred me for an MRI scan. Three more MRI scans and appointments with two neurology consultants later, yesterday afternoon I received my diagnosis of relapsing remitting MS. To be honest in my heart of hearts I knew that it was coming.
The consultant I saw yesterday who is an MS specialist was disussing starting me on some medication but was unsure what level of treatment or type of medication I should be given and explained that he wanted to discuss this with the MS nurse and one of his colleagues (another MS specialist) at a different hospital.
I have been trying to do some research into medication/treatments but feel totally clueless and was wondering if this was normal proceedure i.e for the neuro’s to get together and sit down to discuss treatment?
Also I wondered how people have dealt with telling people at work abut their diagnosis. I work for a small company where there are less than 30 people. Some of the people I work with are my friends both inside and outside of work and know what I have been dealing with so that’s fine and I have kept my employers up to date at each stage of the diagnosis journey so thats fi toone. The bit that concerns me is i am not sure what to do about the rest of my colleagues who I am not close with but who have seen the change in me and keep asking what is wrong. Being such a small company it is obvious when I am out of the office attending appointments etc but I know that some of these people are purely showing fake conscern just so they can get the gossip so to speak.
I would love to hear how people have coped with being newly diagnosed.
Im not able really to help with your question about work as I’m in a similar situation (someone else will be able to help, I’m sure), but I can definitely empathise with the ‘working through’ it scenario - that’s what I did!
For what it’s worth, I wouldn’t be in a hurry to tell everyone at work. Take time to get your head around everything first. I told a few colleagues who I work really closely with and the HR people, in confidence. Even those few conversations became a bit tiresome.
I am sure other people wonder what’s up - especially as I must seem a bit wobbly on my legs sometimes! But it’s my business and as time has passed I feel a bit more confident about everything that is going on. I am sure you will too although there’s no doubt it’s a tricky time. Don’t feel under pressure to tell people.
Hi, exactly the same here, newly diagnosed but the neuros are thinking whether it’s SPMS or RRMS (I will leave you to it guys) and can’t get my head around all the drugs etc. I am meant to be clever too (am head of humanities at a v good local secondary school) but reading about all the DMDs makes my head spin and I just don’t understand whether to push for them or accept I have SPMS and accept there is nothing x I have had ON also, twice and it’s a very weird thing, last time I had it 10 years ago there was nothing extra; this time I had what I consider my first major relpase (though I had other major symptoms - did not realise they were all linked - but then again my doctor never joined the dots either). Anyway I am back at work on Monday after the holidays and I will tell everyone, plan to be open as it explains my stutterings during meetings and v weak legs. I hope that my colleagues will be supportive and understand when I have to have time off for medical appointments, but it’s all new and if they are not supportive then it tell’s me more about them then it does about me!! Good luck with everything x x x stacey x x
Hi Gemma. I am still awaiting a diagnosis but your rollercoaster is a perfect description! My optic neuritis started several months ago and is still with me. I will get to see the neuro early in November so may learn more then. Regards David
Nothing unusual about specialists discussing cases with their specialist colleagues - it’s a good sign of a switched-on and open-minded clinician, in my view! Sounds like you’ve got a good 'un there.
The ‘who to tell at work and when’ one is difficult, I know. Everyone and every workplace is different. Once I had a dx, I was fairly open at work - no big announcement or anything, but I did tell a number of people and made clear that I wasn’t telling them in confidence, so the news spread organically, as news does. Worked for me. Only problem was, I kept working there for years and it was a big company and I didn’t know half the time who outside my close colleagues knew and who didn’t! But I learned to live with that.
I am sorry about your dx. It’s an awful shock, even when it isn’t totally out of the blue.
I am so sorry to hear of your diagnosis, hope all goes well with work.
you say you had three MRI’s? I wondered if something showed on all three for you to have that many? Forgive my curiosity but I am stuck in limbo with very few answers for a lot of horrid symptoms.
I was diagnosed over a week ago, I was given steroids on a 5 day course. I asked what type of ms I have and was told it’s too early to tell, I am waiting for my ms nurse to contact me, I am pretty disabled right now my walking has been the worse part which I am hoping steroids and physio help.
so I am housebound for past year, but I am hopeful I’ll get better with medication physio my neurologist is great though
