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Hello Everybody!! My names Mike or Mikey as my friends call me. I just joined this site out of curiosity - so thought id write a few lines to introduce my self, say hello and invite you to comment on my short story or my sense of denial. Here’s my short story oh and please i ask you not to judge my writing skills or lack of : )))) too harshly as i have dyslexia.

12 Months ago my life crashed. Without me being too overly dramatic about all this MS stuff, it really was as sudden as a car crash.
It was just another fun filled day @ work for me. At around 1.00pm one Friday afternoon back in early February 2011. Me and my work colleges had just finished eating our lunch. I decided to make my way down the hill to our newly constructed work shop where we were working on a new military differential ~ oh but that’s top secret so don’t tell any one ok : )
As i began walking down the hill, adam pulled up along side me on his forklift truck and joined me on my short walk. Then suddenly and without warning i lost my ability to balance completely. Luckily i just fell against Adams truck. I just stood there, holding onto the truck trying to figure out what had just happened to me, then again without any warning my eyes started to flicker uncontrollably and so rapidly my vision became just simply a blur. This was my introduction to my newly acquired Disseminating illness, and now as from the 25th of January 2012 apparently this is called multiple sclerosis.

Actually to finally receive this diagnosis came as a relief to me. Sounds strange but its true, after nearly twelve months of having no explanations, especially to my family and friends, as to why i have a funny walk, why i have mood changes, why for no apparent reason i just start crying, why for no apparent reason i start laughing, well finally now i do… or do i?

Maybe im in denial? I mean to say i understand my disseminated cerebellum affects my walk, my coordination, my gait and among a whole host of other things my emotions too. Well in my case my emotional perceptions, and to be honest i just don’t trust my own judgment at the moment, but when my neurologist told me about multiple sclerosis, he seamed to lose congruence, his eyes told me of his uncertainty.
He referred me to a MS specialist in Coventry, who has confirmed his original diagnosis, now im to choose between these various drugs.

Anyways now im thinking if the new confirmed diagnosis is based on the original MRI scan, the Lumber puncture results, my EVP/ERG results (Electroretinogram/Visual Evoked Potential) or in English, an eye test…hahahaha oh and a short physical examination by the MS specialist, do i have ms? am i experiencing denial?

Hey im the first person to admit, im no angel, certainly in my youth I’ve experimented with various recreational drugs. Im not proud of it, and yes up until February 2011, i drank too much alcohol had a poor diet and smoked too many cigarettes from what ive read about MS, i thought a definitive diagnosis can only be reached by most of my test results plus a new MRI scan which is compared to my original scan results. I know alcohol can be responsible for my inner cranial lesion’s.

Ok time to rest my eyes, well id be most interested to read any random comments from you guys n girls reading this, maybe my story sounds familiar? I understand a persons denial is simply a natural response to any number of personal issues. Maybe you can help with my perspective?

Thanks for taking the time to read my words oh and thank god for the spellchecker! : ))))

Mikey

Hi Mikey, and welcome to the site

Drugs and alcohol can certainly screw your brain up, but I’m afraid they don’t cause lesions that are visible on MRI and in the “right” places for MS. They also don’t cause positive LPs, positive VEPs or positive clinical exams for MS. Ultimately, there’s just no getting away from the fact that neurologists and MS specialists do not tend to hand out diagnoses of MS without being pretty certain that it’s right.

Being in denial is a perfectly rational thing to be though - most of us go through it at one stage or another! We also become angry, fearful, sad,… Basically, the first couple of years are an emotional rollercoaster. Time really does heal though - after a while, you’ll learn to accept it. We might have a new label and our body might be playing tricks on us, but life goes on. And it can still be good.

Give yourself some time to adjust to all of this. One day at a time.

Karen x

Sorry, I forgot to say: check out http://www.msdecisions.org.uk/ to choose between the disease modifying drugs (DMDs). There is loads of good info on there.

Kx

Hi Mikey and welcome to the site

A diagnosis of ms is not easy to come by. A neuro isn’t going to commit to something like this if he’s not sure and the fact that you’ve now seen an ms specialist confirms it.

It’s a double edged sword. Relief - yes - because we finally ‘know’ why we feel the way we do, but on the other hand…

Being told news like this can be an emotional rollercoaster, something most of us here can relate to. There’s no easy way round it - just time. It’s a lot to get our heads round and that’s tougher to do than most people who’ve not had to go through it, realise.

Take your time - there’s no rush - one baby step at a time. When you feel ready to learn more about ms there’s lots of information available here and on the ms trust website, publications which you can download, read online or order to have delivered by post. They’re worth having a look at and there’s a wide choice too.

The ms decisions website is useful when it comes to choosing between the different dmd’s and also offers info on them, allowing you to compare them and what’s better suited to you and your lifestyle.

No one wants ms (or any other illness) and it can be hard to get over the initial news of the diagnosis but you will. Your past is your past - try not to go down the route of ‘questioning’ whether it’s something you’ve done or not done. The upshot is you know what’s wrong now and there are lots of things you can do and try to help.

I hope this helps…even a little!

Debbie xx

Hello Rebecca, Karen and Debbie. Thanks for taking the time to write your comments here for me to read.
Talk about me being in denial… Now i sit here writing this and feel so stupid : )))) You’ve all helped me realize a few things thats for sure.

Well thanks once again

Mikey

Mikey you are not stupid.

It’s a big deal and takes time. I’m glad however that what we’ve said has helped in some way

Look after you - you know where we are…

Debbie xx

Hiya Mikey…im new to all this aswell.Saw a new ms neuro on mon and told phase one or two drugs to start soon,thankfully Karen explained what that meant and pointed the way to ms decisions.Its well worth a read- mind you the choices all seem to leave you stuck between a rock and a hard place.

Ive gone into hey ho mode and at least life wont be boring as new things seem to get thrown up daily and the only guide book I can find is the good people on this site.

So hello fellow traveller

Pip

Hello Pip and Welcome to the party!!! : ))))

Pip this sites cool, the advice here as far as i can tell is accurate, constructive and positive, invaluable even.
I agree with you pip, stuck between a rock and hard place, I’ve not decided yet as to these disease modifying drugs either, the ms decisions site is proving helpful thou. I guess anything that will reduce the severity of the next one, the next time ms decides to take another bite outta me will do just fine : ))))

Anyways Pip, its good to meet you here my fellow traveler : ))))

Mikey