I was diagnosed with RRMS on Friday following a demyelinating event at C4 at the beginning of July. Subsequent scans found lesions in my brain also and an LP confirmed the diagnosis.
I am totally reeling from this. I am absolutely terrified of a relapse.
I am being referred to a tertiary specialist as I have only been seen by a general neurologist so far.
My general neurologist said it sounded like I know more about MS than he does!
I am so anxious to be seen and started on some treatment. I’m worried the referral will ‘slip through the net’.
I am an OT and cannot express how confronting my job is right now. I see those who have lost function and this is now the fear I have for myself. It also gives me a really skewed impression of MS - I’m sure there are lots of people living well with MS but I just don’t see any of them!
I feel like I need to take some time off work to give myself some space to start coming to terms with my diagnosis.
Is feeling like this normal? My general neurologist is finding my reaction unusual - he says my symptoms are mild and my lesions are subtle. But none of it feels mild and subtle to me!
Thanks in advance for any pearls of wisdom and encouragement.
The evidence suggests that sooner you start treatment, the better the long term outcome. I am guessing that the people you see through your job are older and perhaps didn’t benefit from modern and more effective drugs.
Hey, I just wanted to reply because a lot of what you’ve mentioned feels very familiar to me. I was diagnosed with RRMS last month and I understand how difficult it is to work with patients who may have the same diagnosis. I have found it hard because I know a lot about it.
I’m also an OT and work in community rehab - Ive had a lot of patients with MS who needed a lot of support! I’ve found the diagnosis really hard to deal with. I found it very difficult to work as a OT leading up to the diagnosis which took a long time! Like you, I see a certain side of MS through my job and we normally only see the patients who require a lot of support and have loss of function!
I have been signed off work since because I have been struggling mentally and felt I needed some time to take everything in. I just couldn’t go into work to support patients with the same kind of symptoms I have. My main symptoms at the moment are awful fatigue, occasional pins and needles and also brain fog at times. I am finding it so hard to take my own advice re fatigue management! I am currently awaiting next steps for treatment.
I don’t have much advice because I’m in the same position, but I just wanted to say that you’re definitely not alone in feeling like this. I wouldn’t say it is unusual as it is a major diagnosis and also so different to adjust to when we see only one side of MS at work. Happy to chat if you ever wanted to
I’m sorry to hear you’ve had such a difficult experience post-diagnosis. I felt the same when I was first diagnosed, because like you, my view of MS had been influenced by my only knowledge of it up until that point.
Before I try to reassure you, I want to say that the feelings you have are very normal and I think it was very insensitive of your neurologist to say what he did about your reaction. You are fully entitled to feel bewildered, frightened, panicked and overwhelmed. I spent a good bit of time grieving the old me. You’re entitled to take time to come to terms with your diagnosis.
I felt the same way when I was first diagnosed, but fast-forward to today and I no longer feel that way, because I now feel better informed about my condition and the options available to me.
I got a great deal of comfort and reassurance from the MS society community, which laid to rest some of my fears and made me a whole lot more positive about what might be ahead. I really hope that it can help you in the same way
I do think it’s so hard for people like nurses, physios OTs, carers et cetera because you guys know how bad it can get. You can tell yourself until you blue in the face that it doesn’t always get that bad and you’ll be right but it doesn’t help much, I don’t suppose. And that the modern drugs can stop even very active RRMS its tracks in a way that just wasn’t possible 20 years ago. Also true, as I know from personal experience. Folks with ms in the family have the same frightening examples
All I can suggest is that you do what you try to stay grounded in the here and now, the routines of life, the things that have to be done. If work’s not possible right now that’s a pity but you know best what you can handle. Just try to make sure you have some structure in your day to protect you from the rumination and what if? circular questions that cannot be answered.
I hope that you get a treatment plan in place very soon – that is always good for morale. Hang in there – it won’t always feel this bad. The early days are very tough and there’s no getting around it. But something like normality reasserts itself sooner than you think.
Hello @wjoanna03 my sympathies to you. I sort of understand how you are feeling. I’m not an OT or anything like that but when I was first diagnosed 19 years ago my only knowledge of MS was from seeing my Aunt’s gradual deterioration/ increasing disability as a result of MS. Her diagnosis was in the days before any treatments existed and MS affected her badly. I’m sure she would have fared much better if DMTs had been available.
On more positive notes, I was diagnosed with RRMS and put on one of what I think was the first 3 Treatments (Avonex). These days those early treatments are considered to be low/ moderate effectiveness but 19 years later and age 72 I’m still on Avonex and not too badly affected by MS. I can still walk but use a stick , Rollator or small Scooter when out and about . I was able to carry on working effectively for a good few years until an opportunity for early retirement came up.
Something I did in the early days of diagnosis was to get myself some counselling sessions which were very useful in working through what have now turned out to be unfounded fears about my future.
I would take heart in what your Neurologist says about mild symptoms and subtle lesions and try some counselling, also , for me, keeping busy at work provided a rewarding and welcome distraction from sitting at home dwelling on my fears. With mild symptoms, subtle lesions and the newer / highly effective DMTs you could have many enjoyable years ahead of you.
