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Newly diagnosed and struggling massively

Hi all,

I was diagnosed with MS last Friday. I’m struggling massively to come to terms with it all. I have a 15-month-old daughter and I returned to work full time in August. After a few months of adjusting, I thought I had finally developed a good routine for balancing work and mummy life so this all feels like a big slap in the face. The day I was diagnosed the only information I was given other than the diagnosis was that the MRI scan showed inflammation in my neck and parts of my spine, and that my current symptoms together with two episodes of double vision a few years back all pointed to MS. No leaflets, no information about support, no definitive information about what stage I’m at. The doctors/ nurses just kept shoving a sick self-certificate in my face apologising profusely and telling me to take the week off work.

These past few days I felt so flat, confused, deflated at home. I’m trying to distract myself but I can’t help but think about worst case scenarios. I also feel SO bad for taking time off work, I feel like I’ve let my colleagues down by over stretching them at work. Ironically I work as a Neuro Occupational Therapist although my experience is predominantly in Stroke rehabilitation. I had some knowledge of MS but that all went out the window when I was told I had it. After I was diagnosed I spoke to my manager and told her I wasn’t ready to face treating patients with similar symptoms to me, or putting on a game face with my colleagues. But now I’m second guessing my decision. Apart from my numb/ tingly legs and the intermittent shooting pain in my toes, I feel generally okay in myself but everyone keeps telling me to take it easy. My husband and family are also being super supportive but they’re wrapping me up in cotton wool I feel a bit suffocated.

Has anyone else felt the same? Sorry I feel like I’m rambling…

Oh blimey, talk about patient care! That sounds like an extremely unpleasant way to hear some very nasty news.

And if you happen through your job to know something about MS and what problems people can have with it, it’s even worse than knowing absolutely nothing.

You should be assigned an MS nurse, who hopefully, will be worth his/her weight in gold / chocolate / gin (take your pick, a good one is worth way more than a neurologist!) If you’ve not been given contact details (and it sounds that way) then phone the neurologists secretary and ask for how to get assigned one.

Initially, most people are assumed to have relapsing remitting MS in the absence of any evidence otherwise. And the fact that you’ve had optic neuritis previously and recovered from it then I would assume you will have RRMS. Which means that hopefully soon, you will have an appointment to discuss disease modifying drugs (DMDs). The aim of DMDs is to reduce the number and severity of relapses. So assuming you get on one soon and it’s a drug that suits you, you will hopefully have very few future relapses. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You are unlikey to be offered a completely free choice of all the DMDs, it will depend on how active your MS is, what prescribing centres have been set up locally, your neurologists preference, and your own choice.

It’s a hell of a thing to wrap your head around an MS diagnosis. You are bound to feel a whole gamut of emotions. Don’t be too hard on yourself, it’s not required that you ‘accept’ the diagnosis, or that you can’t feel furiously angry about it.

And come back here when you have questions, thoughts, or just want to express your feelings about it.

Sue

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Sue is so right, you should find if you have a MS nurse in your area. A good one is a treasure hoard of knowhow and experience which can’t be beaten. There’s never any need to apologise for posting here. In any case I thought you were very concise in the description of your position. And you’re welcome to this Forum whenever and as often as you like. You’ll get empathy and meet people who’ll really understand what you’re going through and how you feel. Regards, Anthony

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Gosh thank you so much for your lovely messages! Yes thinking about it all now I’m angry at the lack of support that was offered. Although having this week off has helped me focus on myself and take some well needed time out I’ve felt completely lost. I don’t know if it’s a good idea but I was thinking to attend my local coffee morning tomorrow. Has anyone been and would you advise it for someone who’s newly diagnosed? My biggest fears are what the future holds which I’m sure many of you have all had in the early stages. I’m trying really hard to be my own OT but when I look at my daughter fear creeps into my head. That’s why I thought speaking with other people who have MS might help as I know although the condition is not treatable it’s manageable

I think an MS dx is particularly tough for those in the medical/caring professions who deal with clients with MS. This is because most of the clients they will see with MS will be, not to put too fine a point on it, in a pretty bad way. No wonder the professionals get the heebie-jeebies when they get their own MS dx. Honestly, most people with MS do not come to the attention of neuro occupational therapists or neuro physios for years or decades, let alone fall among nurses or a carers in residential care. So please don’t forget that your clients with MS are most likely people who have had it for a long time and/or been particularly badly affected. For what it’s worth, the friend who was most frankly and completely horrified by my MS dx back in 1999 was someone who had nursed long-term MS patients the age I was then, back in the bad old days before DMDs. I do not think her reaction was unusual.

Having MS is all sorts of bad news: I’m not trying to downplay it. My point simply is that people who do jobs like yours can have a particularly tough time accepting that an MS dx is not necessarily a slippery slope to the kind of trouble that they see with their MS clients.

Alison

Don’t feel bad for taking some time off work !! When all this started for me I had about 5 weeks off, mainly because I could not face doing the small part of my role involving sickness. I knew I was not in the right place to deal with people in the right way. So my advice to you would be to take however much time you need to be in the right place emotionaly.

Your job role involves helping improve people’s lives. That is great. But for a minute you need to look after you & deal with your own fears. It’s great that physically you feel well enough to return. That suggests that once you have come to terms with it (a bit), you will be able to continue working. .

All the very best at this horrible time.

Thank you so much for your supportive message. I’m a workaholic and I love my job but you’re right I need to be emotionally okay before I can help others. My husband was so upset when I told him I wanted to go back to work tomorrow because I felt bad for the staff and my patients. Guilt is something I’m trying to work through in my head. I’m a complete people pleaser I never say no and always aim to please and help others. It’s so hard to put myself first I can’t even tell you. It’s like it’s not in my DNA! I’m trying to tell myself that this is my wake up call to start putting me first. It’s okay to not answer a call if I don’t feel like it. It’s okay to want to spend the day on the sofa. It’s just so hard to re programme me

Hi i was just diagnosed in November and I feel the same way as you! i also have two little kids and I am 28 ugh we will be fine!