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NEW AND CONFUSED

hi all,first time on the forum as it seems to have taken me a bit of time to know how to put it all into words?

the clinical stuff im ok with; diagnosed in june this year a week before my 50th borthday!! i have had only what i think are mild symptons. starting in 2008 with a numb leg which i was told was b12 def,so since then i had the regular injections which sorted that.then last year i had carpal tunnel symptons which also went within a couple of weeks.then tiny numb patch on my face,then very peculiar numb,hot sensation all around my stomach and hip. all of these cleared quickly.any way this lead my doctor to refer me for neuro appointment,then mri,then the bad news. i have 2 brain lesions and 1 on upper spine.

neuro has told me its benign ms ? and to go away,check this site out. read up about DMD and he will see me in 3 months.

SO…here iam. it was horrible telling my family and friends as i felt like the grim reaper. i am a really up beat person and being really positive but this last week i really feel rubbish. beyond tired and a bit alone with all this,even though i have great family and friends i reall do. i feel like i am just containing all this and not doing what i think i should. i think reading this forum has really helped these last few weeks but i feel so nervous to do this post-maybe it is admiitting something to myself? i have so many questions in my head.

i hope i have done this post right as i am bit of techno phobe x

Hello, well you’ve found the right place to vent your thoughts. fears and frustrations. Lots of us feel dreadful about so many things. Relying on others and realising any developing limitations are two of the worst. Getting others to accept necessary “lifestyle” changes is also difficult. This particular website is really good at helping you define your condition-see MS symptoms-which is useful when explaining things to others. The best thing I can say is that after 20 plus years I still have a good time. The symptoms are crap but I look at the good things! Take your time to have a look around the website. Best wishes, Steve.

Hi hopeful Look at it this way…this first time will be the last first time…so yey, you’ve done it, joined a merry gang and met some new friends who all empathise and understand !! Welcome Catherine Xx

Hi Welcome to the forum. You said you’ve lots of questions in your head; this is a great place to ask them. No one judges and anyone who can help will do so. I was diagnosed recently with ‘benign’ MS. But it doesn’t stop me from feeling scared and confused. Feel free to PM me if you need to. Jane xxx

Hello and welcome to the forum

I’m sorry to hear of your diagnosis. Neuro’s are great at giving us funny little labels with MS which are somehow meant to make us feel better - apparently I have ‘mild’ RRMS. Either way, we still have MS and we still have the same hopes and fears. I received my official diagnosis 2 days after my 44th birthday!

There is no ‘normal’ way to deal with an MS diagnosis, it turns your life upside down and is like a rollercoaster ride you didn’t want. I veered between anger and tears for several months and it wasn’t until I spoke to someone else with MS that I realised I would be okay; life does go on, it’s just not the same as I had planned it.

These boards are great places to come for advice, support, a moan, gossip, a laugh, a cry etc. If you look down the page at the other posts you’ll see lots of variety and nobody goes unanswered. We do our best to support each other. It’s the first place I turn to when I have any worries or need any advice.

So, all those questions you have running through your head - if you can’t find the answer in the general About MS section on this website - then ask on here. There are so many people here with so much experience and knowledge about MS (far more than your GP) that someone will be able to help.

Take care

Tracey x

hi hopeful

i was diagnosed the week before my 50th birthday too, back in october 2008

its difficult to get used to, mainly because mine keeps changing all the time.

for explaining to family and other people, i found the ms society booklet “Relapsing remitting multiple sclerosis” very useful

(just think of it as faulty wiring)

also ‘scler’ means ‘scar’ so knowing that we have multiple scars on our brains is another way to explain it to others

for explaining the fatigue, google “spoon theory”

for chatting to other people with ms you could try your nearest ms therapy centre

i go to one in trafford and there are loads of therapies available at a subsidised price.

HBOT is very good

take it as slowly as you want or need to

get plenty of rest

carole x

thankyou to everyone that responded to my first post. i feel bewildered by how good and reassured i feel by the response. i just feel as though all my jigsaw puzzles pieces of life have been muddled up and i have to get my head round that. but weirdly there is a weight off my shoulders,not sure why,but i feel my mindset may have changed for the better

Hi hopeful, I’m 39. And been dx 3yrs. I only joined this forum recently , but have gained a lot of support and good advice. It’s reassuring to talk to people who understand what it’s like. Hope X

Oh sorry forgot to say, googling the “spoon theory” is good advice , especially when people think they understand fatigue. Hope X

Hi Hopeful

Just wanted to say ‘welcome’ and you’ve certainly done the right thing in joining the forum. I was dx Nov 2012 with RRMS after 18 months of being in limbo - and the folk on this forum have been an enormous help to me, both in answering questions and in just ‘being there’. Yep there are times when you feel incredibly alone, despite wonderful family and friends, but you won’t always feel as you do at the moment. As has already been said, the ‘spoon theory’ is excellent - it will help you understand more about the fatigue as well as being able to give it to others to read.

Take care of yourself, get plently of rest and remember that tears are OK - it’s all part of the grieving process for what we have all lost when the MS hits. There’ll be adjustments that are needed along the way, but MS doesn’t mean that your life is over - it’s just different now and there’s so much we can appreciate day by day. PM if you want to.

Hazel x

Hi, also new to this. Diagnosed 3 July after 5 weeks of tests. Had numbness then optic neuritis. 2 mri of spine confirmed. Now waiting to go for brain scan. 28yrs old and 1 year married. Very confused :frowning: what’s normal? What’s not? Would appreciate any advice at all.

Linda x :slight_smile: