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Diagnosed today

Hello all,

So received a letter today confirming diagnosis of MS. I’ve got a follow up appointment on 21st so I guess they’ll discuss treatment options then and which kind it is. I knew it was likely to be MS but still feel a little upset and worried about what the future will bring. My Occupational health dept have been fab and have told me to hold off going back to work until I’ve seen the neurologist. So for now just going to try and be positive and take it on board, what will be, will be.

Carole x

Hi

I had my diagnosis at the beginning of September. It was a relief as I’ve been having problems for years with no one knowing what was wrong with me. They were treating me for a drop foot and I’ve been unable to drive for a couple of years as it’s my right foot.

I can’t have an MRI, as I have a pacemaker. Eventually I was referred to neurology and a lovely consultant had me have a CT scan of my brain.

He found there were some lesions on the scan and diagnosed MS.

It explains a lot I have nerve pain in my right foot, my right legs doesn’t work as it should and neuralgia pain in my face and head. I’ve had some of these symptoms for years and they think I’ve had MS for years. I had a numbness episode in my legs 10 years ago and also 20 years ago.

The week before my diagnosis I decided I was going to sell my house and move closer to my Mum. Therefore, not only am I dealing with my diagnosis but moving, after 20 years in my current house.

I’ve told my Mum and a couple of close friends but not other people as I’m not sure I could cope with their reaction.

The local MS group have regular meetings but again I’m not ready to go. I’m going to a session next week for people who have been newly diagnosed not sure what to expect.

I’ve never known anyone with MS not sure what it’s going to do to me or how I’ll cope.

At the moment I am working with the positives. I know what it is and can be managed correctly. I’m going to get a driving assessment to let me drive again (an adapted car). I’m going to move to a new house, to a lovely place which will give me some peace and quiet rather than in the middle of suburbia.

In my low moments I ring the MS helpline and they always give me good advice and make me feel better.

x

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Hi, I can’t imagine moving house but it’ll be good to be nearer your mum. You reminded me of a couple of things, the local MS group which I might well join and the fact I need to tell the DVLA. What about your GP they can be a good source of support Carole x

Hello Carole

Well at least you’re out of Limbo. And it’s not NMO, which is good.

But on the other hand, regardless of having told yourself MS is better than NMO and it was likely to be one or the other, seeing it in writing is still hard. Once you’ve opened that letter, that was it, you have MS.

You are likely to go through all manner of emotions over the next few weeks and months. Don’t be surprised if you get tearful, feel low and maybe depressed. You may get to a point of acceptance, but don’t be in a hurry to get there, many of us haven’t reached that point after more than 20 years. I still swear at MS.

Good luck for the appointment with the neurologist.

Sue

Hello

Diagnosis is a process that can take weeks/months/years. Don’t worry about telling people, you’ll tell the most important people in your life, and others as they need to know, if they do.

Moving house is another big upheaval in your life. Hopefully you’ll be able to future proof the new house, make sure you can cope with it in case you become more affected by MS.

Much as you are doing with the car. Having a driving assessment first is a good way to do it. That’s what I did, I found that I was still just about legal in my stopping times (in an unadapted automatic) but decided to have the adaptations anyway. I also took a few lessons in driving the adapted car. It’s a strange thing, getting used to hand controls. Quite soon it became second nature.

Being close to your mother will be great. At least you know you’ll have moral support close at hand.

Of course, we’re all here too.

Sue

Hi Carole, I’d been thinking about you, glad you have your answer and can start actually taking positive action, but obviously that’s still a really big diagnosis to get your head round even though it was the lesser of two evils. Hopefully knowing you have an actual diagnosis will help you feel less anxious about getting back to work just yet, it’s hardly like you’re malingering or they’re going to lose patience or anything! It sounds like they’re being really supportive which is great, after all they need you at your best (whatever that will look like going forward) so you can give your best to the women.

Hi carole when i was finally told 16 years after my first symtpom, i felt relief because now perhaps my family would finally believe me and treat me in a different way. I always thought they felt i was making excuses why i couldnt go to an EVENING DO, or drive a long way for a party.

the saddest thing for me was i couldnt tell my mum as she died just over a week before i was told.

BUT it made little difference to me, or my wellbeing to be truthful as i was given the dreaded words, you have progressive MS, sorry nowt we can do for you, but you seem to be dealing with it all very well, and gave me an MS nurse who it took a year to see and was a waste of time. i have since seen the neuo recently, who again thought i was handling it all very well, we explored the only treatment Ocrevus for PPMS but he was not really that happy about me being on it at 68, and felt as it had been a long time since i first got sick the medication would probably not work anyway, and reading up about it, i thought hell no, i would rather just deal with it all myself.

if you have RRMS you have a chance of recoveries and feeling at least yourself. I just care about my body, i dont drink, smoke and i eat very healthy.

BUT like i said i felt vindicated, as finally i could prove i had MS, and was not just avoiding family. I went years on my own with no support when i really needed it and now i have visitors from them.

take care and good luck. xxxxx

Yes, you’re right, i still feel guilty though. When is your head mri??

Thank you crazy chick. I am sure your mum is watching over you. I do feel vindicated just as you say, I’ve been saying for ages there is something wrong and now they believe me, and i do feel better than i did so it probably is RRMS. Although had the first inkling something was wrong in Feb and then a ‘big attack’ at the end of May so that seems quite close together to me but I guess everyone is different. Take Care xx