First post. Waiting for specialists.

New diagnosis and before diagnosis
1

Hello,

I’m a 37 year old woman and my journey began in February when I went to my GP with what I thought was vertigo. After referral to hospital to rule out a stroke and no improvement in symptoms I saw a neurologist two days later (very lucky to have private medical through work) and had an MRI where a large lesion was found in my brain. At this point I was told to ‘wait and see’ as the optical neuritis could be the result of an infection or … the term MS came up. I was very frightened I admit and began too much research immediately that left me terrified and confused by conflicting ideas.

Although my eyes got better after a 3 day steroid infusion, my lumbar puncture was positive and then two weeks ago I began to suffer weakness/shaking in my right arm and leg. I am now awaiting a second MRI and referral to my local NHS MS specialist clinic. This has all been in the space of 4 months and I have spent most of that braving the day and crying at night. I have no energy for any of my previous crafty hobbies and I know I am beginning to shut out the world as I feel embarrassed and ashamed of my failing body (which is ridiculous, wrong and counter productive).

This was not supposed to happen. I work full time teaching A levels, have two small children ( the older of whom knows something is wrong but who I have not explained anything to as she attends my school and I fear she will say something so my colleagues will find out before I am ready to tell them) and I can’t imagine how my (lovely but scatty and over dramatic) husband will cope. If I have to give up work our lives will change practically as well with nursery fees impossible to sustain and plans for holidays/activities all changed. This is not the end of the world, but it is the end of the little life I had planned (and I grieve for it). I know I must find a way to accept all this and take any steps I can to help keep me healthy but I keep thinking that my family would be better starting over without the shadow of this and burden of me.

I would just really like someone who understands to talk to. My family are northern stoics who don’t ‘do’ emotion!

2

Hello

So sorry to read about your recent troubles.

I’m 36 and was formally diagnosed on Tuesday with RRMS. My journey also only started this February with a quick trip to A&E to deal with numb feet - so I’m also very new to this. When I first found out I could have MS I immediately put myself in the worst physical/mental/emotional/ financial place for my future - it was a very lonely place. I asked my boyfriend of three years to leave me* - or at the very least take his house of the market (we were in the process of moving him into mine, with a view to us buying a new house together this year). I didn’t want to ruin both our lives - and I simply couldn’t relate my view of a person with MS to my view of our future.

Over the last few months I have spent time researching this disease (and forums like this and Shift:MS are great for that) and have discovered lots of other people with MS like us (young /fit/active people continuing their full busy lives, enjoying their careers and having and loving their families). This has helped me feel much less lonely - and to relate MS to myself - something I initially struggled with. Once I was able to do this, I was able to start looking into how the disease can be managed - and how it doesn’t mean you need to change your dreams, just think a bit more flexibly about how you achieve them. My initial reaction of fearing the worst was normal and understandable (and I’ve forgiven myself for it through a process of wine, chocolate and boxing!) - but it was also based on a misunderstanding of the disease - which is not the beast it once was. I’m still coming to terms with this (and there were tears and wine on Tuesday - and will certainly be more to come!), but the points I am trying to remind myself are:

(1) MS is not a fast track to a wheel chair. Something like 70% MSers don’t need a wheel chair 20 years post diagnosis;

(2) MRIs (only used since the 80s), DMDS (only around since the 90s, with Lemtrada only licenced at the end of 2014), and the new diagnosis and treatment guidelines (adopted last year) are gamechangers that will change these stats in our favour in our lifetime - as will the fab new drugs in advanced stages in the development pipeline (including those for progressive disease)

(3) there are increased drugs and treatments that can help manage clinical symptoms - so relapses/ symptoms of progression shouldn’t just be suffered these days

(4) there are things we can do to help make our bodies more resilient to attack and more capable of managing symptoms (diet/exercise/rest/ mindfulness etc)

I think I’ve decided to see MS as a battle - and it is one I want to go into in the best physical/ emotional/ mental state I can - so I’m adopting the adage “knowledge is power”, doing what I can to stay healthy and positive and am preparing to throw everything modern medicine has at this disease to hit it hard and fast. Lemtrada is my first line DMD of choice and I’m pushing for it at the moment (and have an appointment with the MS nurse on Thursday to discuss this). It is a personal choice and not for everyone - but David’s Campath Story (blog from a chap on the initial trial 12 years ago- worth a Google) gave me hope when I thought there was none.

Hope some of that is helpful? Please don’t feel alone. I’ve not told many people about my diagnosis as I’m still trying to understand what it means (but I am beginning to and everyone (including my boss) has been brilliant) and have found posting on here and Shift a real life line.

xxx

(p.s. He didn’t, and he completed on his house sale yesterday and we having viewings for our possible “forever home” booked in for Saturday (and none of them are for bungalows!))

3

Thank you for your really positive reply! Congratulations on your new home too…the ‘old’ me would have talked about tester paint pots endlessly!

I’ve been reading some of your posts and will certainly continue to (not least because you seem be one step ahead and I may get some heads up on the next bit of the process). Your boyfriend sounds great and setting up your home together must be exciting. I have determined on telling some select people including my boss…I think it will be unavoidable and can only hope that they will be understanding ( though I’m not sure what adjustments can be made as the pupils are there when they are there whether I feel up to it or not).

Hope today is a good one for you.

x