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I 'probably' have MS

Hi Everyone,

My story,

About 2 months ago I had numbness/ altered sensation from the waist down, it lasted about a week and then went away; I thought it was because I was wearing new shoes… About a week later it came back, my partner was threatening to take me to A & E ( I’m a well known doctor avoider) I called my G.P and couldn’t get an app til a few days later so I called NHS helpline, who sent an ambulance, so I landed myself in hospital!

I was there for 5 days, had an MRI of both brain and spine, a lumbar puncture and a course of steroids. The MRI showed lesions on my brain, there was no change of symptoms really and I was discharged. Over the coming weeks the symptoms did lesson.

Last week a whole host of new symptoms arose, tight chest, arm, shoulder and neck pains, muscle spasms… Just to name a few. (Mainly upper body this time) I went to the GP who just called my neurologist, I got an app to see the neurologist the next day who told me ‘I probably have MS’ The results of the lumbar puncture came through which indicate this, and I have since had another MRI with contrast, still awaiting those results. I left work last week due to symptoms, I was off until today, which I went in and only lasted an hour.

In all honesty I am struggling, to be told I probably have MS at age 25 but don’t have a full diagnosis, and strangely the fact that everything is happening so quickly. When I was in hospital the first time they told me there was a possibility of MS but it was unlikely, they just has to mention it as in the future it may/ may not happen, but MS can take years to diagnose and be very difficult to. Then to see the neurologist barely a month later to be told I ‘probably’ have MS. It’s an awful lot to process and emotionally very difficult. I think a lot of this is the ‘probably’ MS is a daunting diagnosis and just to have ‘probably’ hanging around and not knowing one way or another…

Current status, awaiting ‘definitely’…

Very long I know, your views/ oppinions would be greatly appreciated.

I am sorry you that this storm of worries has arrived in your life.

You are right that MS is sometimes hard to diagnose, but it isn’t always. Sometimes, as in my own case, it is really pretty straightforward - more a matter of assembling the evidence to support what everyone suspects. In such cases, it doesn’t take too long. Not funny, but a whole load less stressful than years of wondering whether one is going bonkers while the docs write one off as a neurotic. At least once you know you can get on and do something about it (in the case of RRMS that is) by getting on a DMD and starting to take the fight to MS.

But it’s tough, what you are going through, no two ways about it. I hope that you turn out not to have MS, obviously, but, if you do, all I will say is that it won’t be the end of the world. Rotten news, but not the end of the world. Most of us manage to make a good life for ourselves, even if we have to adjust our expectations a bit.

Good luck with it all.

Alison

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Hey Alison,

Thanks for your kind reply.

Saw my neurologist and MS nurse this week. Been diagnosed with RRMS.

Feeling better and more informed now the ‘probably’ has gone!

Hope your well.

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Hiya Zim,

Alison is so right in all she say’s; is it better to be diagnosed quickly or wait years and think you’re going mad?

One thing I will say get a copy (DVD) of your MRI costs about £10. It’s just if you happen to change hospitals invariable they lose their copy so then you have yours. Very handy to see if there is any progression. They must oblige under the Freedom of Information Act.

George