Waiting for diagnoses next week ( convinced myself I have the worst ) and my life is over ) Do you ever wish you. HAd not gone to the GP and just continued as you were. Seems I may have had some minor symptons before but just passed them off as wear & tear, but carried on living unaware , where as now my life is consumed by this and I’m hanging on every twinge and tightening I get. Just don’t know what to do
Of course your life wouldn’t be OVER! Especially if, as you suggest, you might have been living with it unawares for quite some time already. You managed OK then, didn’t you? Your life wasn’t over! The disease doesn’t get worse overnight, just because somebody names it for you. You’re not a different person the day after diagnosis, and your illness isn’t different. Both are the same as the day before - and probably a lot of days before that (or months, or years…) If you’ve been managing up 'til now, there’s no reason to think you suddenly won’t next week, as the only thing to change will be your state of knowledge.
I think I went a long time (years) without being diagnosed, or even suspecting. Although I did have a phase where I was convinced I had Rheumatoid Arthritis (good hunch, wrong illness). For me, I think it was only a matter of time before it was bound to be found out. Ignoring it a little bit longer might have postponed things, but I wouldn’t have been able to remain in ignorance forever. For me, the line was crossed when I woke up one morning, completely unable to feel my feet. There was no way I could pass this off as “normal”, or age-related, or stress, or hormones, or any of that.
Apart from the lack of feeling, I could still function OK - i.e. there was no motor impairment. So it’s possible I could have chosen to disregard it even then, and wait to see if it got better by itself (like the other things had). But although, with hindsight, I seem to have had remarkable powers of persuading myself there was nothing wrong, I couldn’t have gone on like that forever. If I’d ignored it one more time, I’d only have gone on to be diagnosed the next year, or the next. There’s only so far you can ignore the bleedin’ obvious.
I often wonder, if I hadn’t had that particular attack (relapse, as I now know it was), would I be diagnosed yet? I think, at the very least, I’d know I was ill, and be pushing for answers by now. I’m not feeling well enough to keep pretending everything’s fine.
So I definitely think it was not a matter of IF I was diagnosed, but when. Maybe I might have had another couple of years of not knowing, but the truth will out.
I’m not sure the extra couple of years would have been to my advantage. I was starting to beat myself up for not being able to pull myself together. If I’d remained undiagnosed, I’d still be like that today - convinced my struggles were all my own fault - laziness, or lack of moral fibre.
I don’t think that would have been very positive.
Tina
x
Hi Gray, I agree with everything Tina has said. A diagnosis one way or the other should not make any difference to how you live your life. I was diagnosed in 2005 and was told at the time of diagnosis that I had probably had it for at least eight years previously. Unfortunately my MS has progressed now and I have very limited mobility and am virtually permanently in a wheelchair but I feel that my life is far from over and don’t let much stop me. It is a positive attitude that gets you through. Anne x.
No, I don’t wish I didn’t know.
I can understand what you are saying about being ultra aware of any little symptom – but that will go. I’m too busy getting on with stuff to take note of the changes. I’m SP so I’m obviously going downhill but it’s only really noticeable to others. I saw a friend last week for the first time in months and she saw “a big change” but day to day I don’t dwell on it.
The reason I’m glad that I knew 17 years ago was because, as Tina said, it helped me to accept that some of my symptoms (like fatigue) were down to MS and not weakness of character. It was good to know that I didn’t need to “pull myself together”
From where you are, waiting for a dx, having MS must seem like the worst case scenario. But it’s not, not by a long shot (look up motor neuron disease and be grateful it is/might be MS)
Jane
Hi, hun, youve seem to have got a bit of an ear bashing from the other respondents, so Ill take a different tack!
When one is in limbo, the mind can be your worst enemy…coming up with all manner of nasty things that can happen to you.
we may read everything we can lay our hands on, to learn what the condition can entail…even thinking about the very worst scenario…reading about some poor soul who`s life was cut short in a very cruel way and having spent years in care, because no-one else could look after them. It is possible, but not set in concrete, that you could say their life was over…but then that is dependent on how you view things.
So if you do get that diagnosis of MS next week, try not to let it get out of hand in your mind.
Try to let yourself absorb the info and ask what type of MS you have. Some folk say it doesn`t make any difference what type someone has. But it does, because therin lies the possibility of having meds which can slow or reduce relapses and progression of disability.
I have spent many years in limbo and know how it can affect folk. I think a firm diagnosis is better than a big fat question mark on my forehead.
But then, you may not agree with that.
Each one of us is fully entitled to our own thoughts and opinions.
There now…feeling any better yet hun?
Are you taking anyone with you to the appointment next week? I think it would help, as a second set of ears.
Pop back in and let us know how it goes, yeh?
luv Pollx
Because I’d ignored so many little things for so long, and it felt like it was all suddenly getting way too much (the few weeks leading up to seeing the neuro were awful, crawling round the floor after getting out of the bath etc.), it was actally a massive relief. Bad news yes BUT good for my sanity as all the weird stuff suddenly made sense!
Additionally, I lost a work colleague due to a brain tumour a couple of weeks after my diagnosis. The last time I saw him he was asking how I was feeling as my neurologist appointment was coming up, he didn’t say a word about what was going on with him. That was his last day at work, I heard a few days later that he was having an op, so assumed that was good as they were able to operate but it was just a biopsy. The following week I heard that it was teminal. He passed away about 4 weeks after they identified there was a problem. It really put things into perspective for me, the timing was really strange too. I know things might be bad for me and might get a lot worse but at leaset I know what I’m dealing with.
Sorry to bring up such a sad story but I think about him every time I feel panicky and remember that this may make my life tough but I still HAVE a life and for that, I am really thankful. This thing is just a label and I’m gonna make the best of things that I can.
Sonia x
Hi, i agree with Boudica. For me, being in limbo is the worst. i am due to discuss findings of my brain scan with neuro consultant today and i have to say one of my worst fears is coming away from the appointment still not knowing what is wrong with me. All my symptoms point to MS and in a way if it is confirmed it will be a relief, at least then some treatment can be started and i can start to manage my life around the symptoms and illness and stop worrying about what it may be. I hope you get some answers soon.
There aren’t many good options. Having MS and knowing it is rubbish. Having MS and not knowing it is rubbish. Not having MS at all is a good option, but not always available. Thinking you probably have MS and waiting to have it confirmed, hoping against hope and fearing for the future is rubbish on a stick, but doesn’t last long (if you are lucky). Once you know one way or the other, you can start dealing with it. Hang on in there.
Alison
Just to add more thoughts about why it is better to know than not know that you have MS:
It might be that the progression of your disease (that is how you will be in a year, five years or ten years) will be improved by you being given disease modifying drugs (DMDs). This is the biggie - it may be that you will end up being able to live much as you do now, whereas if you weren’t diagnosed until later, your health would have ended up much worse.
Some symptoms can be completely alleviated with drugs, with very few side effects. Once you have a diagnosis, a good neurologist will know about things that can help you.
You can pace yourself and prioritise the things that you spend your energy on.
I think it is hard to come to terms with a diagnosis of MS but you can do that and it is better to do that than to go along suspecting something is wrong but not daring to find out.
I’m glad I found out even though my symptoms aren’t severe and I could most likely have carried on as I am, not knowing for many years. My diagnosis cost me my relationship so it wasn’t easy finding out.
But I have been able to get treatment sooner rather than later and I am hopeful this means I will be well for longer than I would have been if I’d been oblivious.
The waiting to know is by far worse than the finding out. Once you know you have MS you can get on with your life. Sure, it’s kind of a crap diagnosis but at least you know. You get used to your new reality.
Me again.
Lots of good advice from folk there. Most members here, were or are in limbo and know what its like. Those who have had a diagnosis of MS, despite loathing the truth, feel they are in a better place knowing what they are dealing with...even with its uncertain behaviour!
Hope your mind is calmer now hun.
Im still not properly diagnosed after 15 years.......all I know for sure is what I havent got!
luv Pollxx