Forum

limbo has finally worn me down...

Hi all,

my GP told me 6 weeks ago that it’s likely to be MS. At the time, I was just happy it’s not a brain tumor or aneurism and I’ve managed to stay positive. But today, 3 weeks from my neuro appointment, I can’t seem to stop crying. I’m only 29, I’m already having difficulty walking, what if I end up in a wheelchair? I’m only just starting my career and have put that above all other goals… now that’s on hold.

At the moment, it doesn’t even seem to matter whether I have MS or not as I don’t even know if I’ll be eligible for treatment or not… my GP certainly seems at a loss. And MS is such a stupid disease anyway with little certainty in diagnosis, a billion symptoms and a bit of a ladida- let’s wait and see approach by the medical profession (at least that’s my impression).

My sister, who has auto-immune-hepatitis, compared the whole process of getting diagnosed to waiting for the messiah: running from appointment to appointment, specialist to specialist, getting test after test and waiting for something to happen: a diagnosis, medication that solves something, anything. Only that the messiah never comes…

Apologies for not making much sense, I just really needed to vent.

First things first BIG HUGS!!. I’m a young un (well 36 IS young!!!) and I was worried too. The only thing that kept me going is the thought that if I can’t do my normal job then there will alway be something out there for me to do if it is MS. Get ready for a wait yes, I’ve been nearly three moths already and only got the scan this Sunday. BUT, hopefully you’re family and friends will support you and there’s some nice folk on here to sound off with. Main thing is to get a diagnosis first. Till then there’s no point worrying about your job because it might not be MS and could be treatable even if it is to reduce symptoms. Hope you get it sorted :slight_smile:

Oh mj…{hugs}. Something that got me through a rough time (and I’ve had a few even before suspecting MS) is the practice of ‘feeling thankyou’…I read about it in a book called The Magic and have used it a lot, even before seeing the GP recently. Pick anything to say or think thankyou for but they key is to really feel it. It might not be easy at first, especially through the foggy soup of uncertainty and anxiety but there is always something to feel gratitude for, even if its a small, silly thing.“I’m grateful for my stripy purple socks because they keep my feet clean and warm,” That kind of thing. Keep on doing it and it builds up momentum that lifts you up again. I used that, as well as Reiki, acupuncture and chinese herbs to get myself out of depression. You can use gratitude before an event too. I was worried about seeing a different GP than last time as she wasn’t available, so I visualised myself in a doctor’s office being listened to and taken seriously and, most importantly, feeeeeling grateful for that. I ended up seeing a doctor that my Dad had seen and was very happy with; I was listened to, spoken to as an intelligent adult and now have a battery of blood tests lined up. Be gentle with yourself x

Hi mj! I read your message and just wanted to cry and at the same time give you a big hug (and I’ve only received a definite diagnosis myself, in June). I agree with the others. Until you have received a definite diagnosis, stop speculating. Speculation just leads to extra stress and extra worry and you DO NOT need either, at the moment. I’m older than you, but still had goals I planned to achieve in my life eg. Complete the Marathon des Sables, run a sub 3.00hr Marathon etc, etc. I was a very good club runner and running was my life, until June this year. Once I knew what I was dealing with, I can’t deny that I was gutted and initially wanted to end it all. But that’s not healthy, is it; I was letting this disease define my life and my future. None of us knows what the future holds; whether we have a diagnosis of MS or not and we can only play the cards we are dealt- be that lucky or unlucky. Whether it turns out to be MS or not, you do not have to remain a victim. Relax and remain calm- whatever! If it is MS (cos this is an MS Forum), you’ll know that you are in the same boat as the rest of us. There are very effective treatments available now and it will not be the end of your life. Your life will be just a little bit different. Big hug xx ps. I was diagnosed with aggressive RR MS and am only starting to regain proper use of my left side. As soon as I start my treatment in September, I’m aiming to get back to training as soon as possible for my next marathon in January. Stay positive!!!

My crao neuro told me today no drugs will make a difference to you. Imagine how that felt. Idiot coulda let me down lightly.

Thanks all for your support! I really needed it today! I’ve had a pretty good chat with my sister by now, that calmed me down a lot and got me to get back to a more positive view! I really just ran out of patience today. Tracyann, a friend of a friend (yes, I know how that sounds) has MS and recently completed her second Iron Man run, so keep on it !

Wow, Nazra, that sounds horrific. Excuse my ignorance, but does crao neuro mean that your eyesight is affected? What are your symptoms? Will there be a point somewhere down the line where they can medicate? Can you get a second opinion? - Sorry, I feel like I’m bombarding you with silly questions when you probably haven’t even had time to really think about that, yet.

Hi Mj x you will get through this roller coaster of emotions I promise - and having a vent at the uncertainty, the injustice of it all is a bloomin good tool to help you through - so rant away whenever you feel like it! xxjenxx

Thank you so much, everyone! You are wonderful people! I feel so much better today. The waiting really gets to you sometimes! And this constant need for making plans when you really can’t…

Keep making your plans mj and living life to the full. None of us know what the future holds. Love and hugs, Noreen x

It really does get to you. I was referred to a Neuro back in May but my appointment is not due until December 13th - The waiting is really grinding me down.

That sound horrible. I hope you don’t have too many symptoms… I saw my GP today and even she is shocked by how long it takes to see a neuro since there is only so much she can do to help me…

Hello love!

I know how you feel. I spent a long time in limbo, then with a probable PPMS diagnosis, which turned to definite, only to be over turned to another condition altogether!

Throughout those years, I had all sorts of emotions…until finally, last year I was told I definitely do not have MS.

I began with problems when I was 45 and now I am 60…I have learned to do the best I can, if I lose a certain ability, I look for the best way to deal with it, by asking for help/equipment/meds/whatever is available, I ask for it.

I have been fortunate in having excellent support and help from family and the NHS/Social Services etc.

It does seem very unfair that folk as young as you, and younger, get a diagnosis so serious as MS.

But honestly hun, with the right help, you will get through. Always seek help and accept it when it comes.

Life with MS or any chronic condition can still be a good life.

Be good to yourself and keep talking to us, yeh?

pollxx