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Newly Diagnosed

Morning all,

typing this from the night shift at work. After six and a half years of sitting in limbo i have finally been told i have MS. Saw the neuro yesterday, the same neuro who told me last time that i didn’t have MS and that i probably just had migraines (for the fourth time) sat down and told me i do have MS. They found seven lesions on my brain and three at the top of my c-spine and due to that and a drop in my health in september she was happy to diagnose me.

Anyone else go numb and not really feel anything at all when you were told? I’m sat here (restricted until i see the occupational health guys now) and i know i should be devastated and i know it’s going to affect my life but i don’t seem to be able to feel anything at all. I’m sure it will come but numb if the only way i can describe it right now.

And did anyone else get little information at all from the Neuro when diagnosed?. I just got told that i would be referred to the MS team and that they would be in contact “at some point” with no timescales at all.

Stressed and numb sound fair enough. The lack of certainty and clear info adds to what is a very difficult time. It is very difficult not to speculate wildly about all the bad stuff that “might” happen. In my opinion (based only on my own experiences) it can be useful to break things down into small chunks, only deal with the actual symptoms you have and work on building the best team of family, friends and professionals you can and to communicate clearly with them.

all the best

Mick

Feeling numb is a natural reaction, especially after you’ve been waiting so long for a proper diagnosis. Most of us go through a whole load of different emotions like numbness, anger, fear, guilt etc. It’s a lot to take in all at once, and the uncertainty of the wretched disease is frustrating to say the least. I’ve found that the best way to try and cope is to take one day at a time, and avoid trying to speculate on the worst case scenarios. Not easy, I know, but what other choice is there?

As for information from your Neuro, I had to actually ask mine - he gave me loads of leaflets. I also had to ask him for a referral to the MS Nurse! I hope you hear from your MS Team soon so that you can ask them all the questions which I’m sure you have.

Take care and be kind to yourself. xx

Aw Puddytat / Mick

What a nightmare of a journey. I’m really not surprised you feel numb and just uncertain how to react to the diagnosis. It’s just been too long, too many conflicting opinions about what’s been wrong, and too much ignoring of your various symptoms over the years.

I imagine you’ll be given a diagnosis of relapsing remitting MS as your symptoms have changed, improved, got worse, improved over time? I’ve just been having a look at some of your posts from the last few years and it does look like you’ve had a relapsing remitting kind of experience. Which at least means you’ll now be able to get a disease modifying drug (DMD) to help ward off future relapses. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid so you’re at least aware of the various drugs now available.

I suspect you’ll go through all kinds of emotions over the next weeks / months. Furious anger might come next after the numbness goes. Just the thought that you could have been diagnosed some years ago might cause that one. Then there’s irritation, incredulity (of the what the (removed by moderator) variety), and then into a bit of self pity (the ‘why me?’ reaction), followed maybe by the ‘oh well, at least it’s a diagnosis’ kind of resignation.

I know you’ve been a member of the forum for a few years, but now at least you get a ‘welcome to the gang’ message. Just keep letting us know what’s going on for you and what help we could give you, if any.

Sue

Thanks for the replies guys and gals.

Yes i think i’m expecting the RRMS diagnosis when i get seen by the MS team, it certainly fits with what has gone on so far on my journey. I’m definitely going to look into the DMD’s if thats the case as i want to try and extend my time in my job as much as possible as it’s quite an active job. I know long term that might have to change but i am going to try my hardest.

Today’s emotion is less numb and more upset. I have to go and tell my family tomorrow, my wife has taken it a lot better than i expected but telling my mum and dad will be harder i think. We’re one of the weird families where MS actually runs in the family. I will be the third in two generations.

Mick

I like your pragmatic style, don’t panic but just get on finding the best DMD and regime to keep you healthy productive and happy. I get how you feel about telling your parents, it will be a blow, but on the other hand with others in your family having this crappy condition, at least there will be less unknowns. Good luck Mick

mick (too)

Thanks Mick. Yes it does help with having others in the family with it. Two others, dad has ppms and my older brother rrms. Parents and brother told and as supportive as you could expect. I’ll start looking into DMD’s now Mick