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Neuro appt tomorrow....Que Sera Sera....

Well, just jotting down my thoughts really…

my last MRI was conducted to show the neuro if there had been ‘disease activity’ as “my history may well be inkeeping with multiple sclerosis” and the result was that it ‘showed abmormalities in keeping with demyelination with one new lesion since the last one in Feb 2011’.

My arm has been going ‘dead’ quite regularly since my last appointmnet and I have allsorts of strange sensations that quite frankly freak me out - crawling on the top of my head - flashes of heat on my arms and the feeling that someone keeping touching my leg.

I do hope I get a definite answer and I am going to mention to him that my GP is under the impression that MS is seriously being considered so I hope I am brave enough to come out with it.

So, ho hum… kinda scared and I don’t think I will sleep much tonight but as my dad used to say when he was alive ‘keep never minding…que sera sera’. miss you dad :-’(

Hi Amanda, I hope it goes ok tomorrow and you get some more info. The neuro might want to do an LP to give more evidence of MS.

The symptoms you discribe do sound like nerves getting the wrong messages, which would be typical of MS but also typical of other conditions. I know the symptoms can be disturbing, but remind yourself that they are not life threatening… and believe it or not you do get used to them in time.

From what you have said it does sound as if they are looking at a dx of MS. You know from reading this forum that MS is not the end of the world… far from it. Life can still be very good… maybe not what we planned but still good.

I hope you get some definite answers tomorrow… but as you know sometimes it can take a while to dx MS.

Que sera sera is a wonderful way to live. Your dad had the right attitude!

Good luck tomorrow and let us know how it goes,

Pat x

Just wanted to wish you the best of luck for tomorrow. Sam x

Hi Pat, I have already had an LP which ‘tested positive for oligoclonal bands with all other blood tests being normal’ It also said ANA was weakly positive but ENA was negative - whatever that means…

…and thanks Sam xx

Good luck for tomoz Amanda - Pat has given you some good advice. I hope you ge4t some answers as to what’s causing your symptoms.

Reemz

X

Good luck for your appointment today

Alison x

Thinking of you and you know we will all be here whatever the oucome

Pip

Well, I have just got back and it is confirmed - I have the Relapsing Remmitting MS :frowning: and he thinks I have had it for the last ten years or so.

I was kind of expecting him to say it but it is still a huge shock.

He wants me to consider a drugs trial and will call me next week to see if i want to do it, and also he is asking the MS nurse to get in touch.

I just feel like the bottom has just fallen out of my world at the moment - I’m so upset :frowning:

Hi Amanda

I’m so sorry you’ve been diagnosed with MS but at least you have some answers as to whats causing your symptoms now and can try to get some support and help.

I’m sure you’re feeling lost/overwhelmed/confused/upset. Give yourself some time to let it sink in. Even with suspicians hearing it confirmed makes it much more real.

I hope you have your family/partner there to support you and of course you have us here as I’m sure once it sinks in you’ll have lots of questions.

I’m sure you know though MS isn’t cureable it isn’t the end of the world and if you’ve had it for 10years alreadfy you have some experience of what its been like. Remember having MS doesn’t mean you have to stop living. You can still like a fulfilled life even though it might not seem like it at the moment.

Giving you the biggest of hugs. Again I’m sorry it was MS.

Reemz

X

Hi Amanda, I’m so sorry to hear your news, even though it did seem ‘on the cards’… but nevertheless always comes as a shock.

Give yourself time to take it in and freedom to go with the many emotions involved… both up and down (and don’t feel guilty about feeling relief… that’s natural too).

I know it’s hard for you to believe at this stage but believe me, after a while it does become ‘normal’. Life goes on with all its joys and sorrows that have nothing to do with MS. You learn to adapt and then just to get on with it.

Also of course drugs that will help and new treatments coming along all of the time. They are talking of a cure in 10 to 15 years… yes seems like a long time but wasn’t long ago that there was no hope for a cure at all.

Take a ‘one day at a time’ approach esp now with the huge emotions you are feeling (even ‘one hour at a time’)

Be nice to yourself. Think about how you would treat someone else who had just had this news, and then treat yourself in same way.

Take care,

Pat x

So sorry your fears have been confirmed.

Its ok to feel whatever you feel, as we all react to the shock in different ways. You must also remember that shock can last a while so you may not be in control of your emotions for a while yet.

The one positive is as Reemz says it explains the weird stuff and opens doors to help,be that physio,ot or as is likely dmds.

Now you are dx the getting you on dmds and into the systems may take a while,which in a strange way helps you settle with the dx before you start injecting etc.

In your darkest moments dont forget you are still the same person you were last week and you have got through the last 10yrs with it. You never know this drug trial could knock the little MonSter on the head and keep you at where you are now.

When you can, dont forget the housekeeping of informing DVLA…you can get the form online,your insurance,and check your mortgage/insurance policies for critical illness as ms is covered and many have a time limit on claiming.

Take care and be kind to yourself

Pi

Hi Amanda, So sorry it is MS and must be such a shock especially as they said you have had it for a long time. Be sad and upset when you need to be and we will all be here to listen. Big hugs :slight_smile: Sam xx

Hi Amanda So sorry about your news. It does come as a shock when you hear the words, doesn’t it? However, nothing is different than yesterday, in fact you’ve had this ten years. The good thing about the dx is that you now may get the treatment you need to help you. Be kind to yourself. Take this a day at a time and don’t attempt to get your head around it straightaway. Don’t forget that if you need to moan and rant we are here to listen. We know just how you feel. I hope you get lots of support and kindness from your family. Thinking of you, Teresa xx

All my family live on the other side of the country and so I only have a good friend from my martial arts class (the owner in fact) who has come with me to all my appointments - i couldn’t have done it with out her :slight_smile:

I have been reading the website about the dmd choices today and quite frankly it’s made me feel sick. Just the thought of having to inject myself is horrifying butmy neuro really thinks it will benefit me because I have good things in my favour to respond well i.e. female, under 40, mainly sensory symptoms. I’m terrified!

Sorry to hear you’ve had the bad news

I know it doesn’t feel like it right now, but knowing what’s wrong and getting hold of the right treatment really can make a massive difference.

You mention martial arts. If someone attacked you, would you defend yourself? MS is attacking your body. You can do lots to help your body stay strong enough to fight back (like not smoke, eat healthily, stay fit, etc), but one of the most effective weapons an RRMSer has at her/his disposal is DMDs. They reduce relapses, reduce the severity of relapses that still happen, increase life span, delay disability and slow progression. And all that’s needed is regular injections. I know that the word “all” is hard to believe, but I would honestly rather inject myself 10 times a day for the rest of my life than ever take my taekwondo black tag grading again! (And I did that when I was superfit!) Seriously, the injections are dead easy and, if you don’t like needles, there are autoinjectors that mean that you don’t even need to see the needle. In comparison to a sparring class or even a fitness class, injecting is a doddle!

Btw, I started on Copaxone soon after I got my black belt. I went on to do my second Dan and compete for GB in Poomsae (the technical aspect of taekwondo) for several years after that. Taekwondo doesn’t involve weapons, but I used one: my DMD. I am 100% confident that I couldn’t have achieved all I did without it.

Karen x

Thanks everyone and Karen - wow you have really made my day with that reply!!! I am due to take my first dan blackbelt grading in December this year and wondered how the hell I would cope - today’s class was really difficult I think because the dx is still very raw. I struggle with memory and trying to remember my forms and kb sets has been a nightmare.

I will try and read some more of the website tomorrow and see if I can get past page 4 without being sick lol x

I started Copaxone in May and trust me every jab I stick in goes with an …up yours MS…I was relapsing 4 times a year and I havent had one since starting Copaxone.

Is it the msdecisions site you are referring to? If it is when you get to the decision tool at the back,really think it through in how all the different aspects/side effects would really affect you day to day, and by the end of it I have no doubt you will have a gut feeling over which is right for you.

You must believe it when we say the process of injecting is so easy it becomes like cleaning your teeth. My daughter who was terrified of doing them in the hard to reach places doesnt bat an eyelid now.

Good luck with your decision making.

Pip

Yes it is the MS decisions site Pip…I printed the pages off today up to the tool at the back cos I think I will read and absorb the details better. How long is it usually before the MS nurse will ring?