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Live lived in ambiguity while waiting/fearing diagnosis.

I am a long term lurker, first time poster. I’ve been humbled and inspired by the courage and spirit of so many of the posters that contribute to this fourm. Anyway, thank you all. It’s such a gift not to feel so alone on this journey. My experience is one of being in Limboland for 15 years & I am aware how pithy it is compared to many of you: Please forgive me from this. I am just hoping that someone might identify with it & not feel so alone. Anyway, here is my experience… Fifteen years ago, I was told I had 'probably ms. After seven years of being symptom free, I had a second opinion, who suggested the diagnosis was more ‘possible’ than ‘probable’. 8 more years have past. For the first few years I was very scared as to what the future would present. But as years of being asymptomatic continued - I wondered (hoped/prayed) it was a misdiagnosis. After the 2nd opinion, I had more confidence. The prospect of not having MS was a possibility - even if it was MS, I had a positive mental attidue about it - which was good. Anyway, I was always anxious about my health. And`whether I was right to decline Beta Interferon so many years ago… Anyway, around two years ago, subtle signs started to present themselves - which I would research on webdoctor etc (crazy I know): L’hermittes SIgn appeared, the tingling in my legs after a swift walk. Living a live in probability (or possibility) is like living in a continual state of ambiguity. Something might be as frightening as MS or as banal as ordinary stuff. For instance, does my right eye seeing things a little bit blurry because of Optical neurosis or a dodgy perscription? Am I fatigued from MS or is my system run down. Am I feeling L’Hermittes from B12 deficiency or MS? One tries to rationalise away the mounting evidence. Some time ago, I realised how diminished my quality of life had become - not through MS: but from fear itself. Not that I’ve lived my life in fear! I haven’t! I married my wife & my best friend & together we’ve travelled the world. My career has been a great joy that has given me so much - although, as yet, we haven’t had a family. But behind it all, I allowed MS a place of terrible power in my life. It could reduce me to a fearful wreak, whenever a casual occurance (or benign symptom) appeared. This manifests when my wife and I are intimate & I lose my erection. My mind would race - is it MS? Or is it fear of being a parent should I become sick? That last sentiment was difficult for me to write. But it’s honest. I had been keeping my health concerns from my wife. But just last week, I told her. It was good to be honest. I’ve requested another MRI & will meet the neuro & discuss treatment should they encourage it at this point. I’m tired of being afraid & want to take back all the power I had unwittingly gave MS. I hope for much in my life, core amoung them are to, should I become a parent, be able to teach my kid that they will be able to manage whatever life throws at them & there’s nothing to be afraid of. First I hope to learn this myself… Carpe Diem everyone.

Aw, I’m so glad you have opened up to your wife. I would implore you to try and get some professional help too, living in fear is just horrible. MS was a rude awakening for me as it had never crossed my mind but I understand that’s not the case for most.

I wish you every bit of luck with your next MRI and hope you start to feel like you are living your life again very soon,

Sonia x

My sympathies. It must be horrid living in limbo. My first relapse in 1998 was called an episode of ‘demyelination’ by neuro after 6 weeks. The symptoms had completely resolved and pre Google I didn’t even ask more. We only made the connection following next major relapse in 2008. With hindsight those 10 years were a blessing. I had 2 children - I may not have chosen to become a parent had I known I had MS. My advice would be - without a diagnosis you don’t have MS and can hopefully live life fully. Health worries can be so damaging so try to think positive. On the parent side - go for it! They’re an utter joy and I wouldn’t be without them, MS or not. I would imagine the problems you mention are psychological. Ask your GP for some counselling? I found my first apt very helpful - just waiting to hear when the full sessions start. Hope this makes sense - I don’t always! Keep smiling. xx

Hello, I found your post very interesting…as I have also been through and am still going through a life with a massive ? in it`s path.

My story also goes back 15 years or so. Are you and I a set of twins who were separated at birth! LOL! You`re a probably a lot younger than me, I think, because you are talking about maybe starting a family.

I am 61 and am a granny of 4 lovely children, ranging from 4 to 15.

Sadly my diagnoses (yes, I did mean to put it as plural) all turned out to be wrong. I now wear a tag with the following diagnosis;

idiopathic spastic paraparesis

The very affable neurologist, who gave me a whole hour of his time, on the NHS, last year, finally discounted MS once and for all, he said (and I still sometimes spend a miniscule moment wondering if he was wrong) that fancy title simply means, We dont bloody know why you have spasms, spasticity and cant walk!`

There is a possibility that it could be genetic. But there is no known person in my family who ever displayed similar symptoms to me.

The fear you carry around isnt healthy for you, your wife or any children you may have. But it is completely understandable.

If you and your lady would like a family, then id say Go for it! MS or no MS, you deserve to have children if you so wish. Besides, if you do have MS, that in itself neednt be a barrier to having a family.

I do wish you a long and happy life.

luv Pollx

Hello Anon and welcome. I too found your post very interesting. I hope you and your wife do have children, if its what you both want then there’s no reason not to. None of us can see in to the future, so live your life. I can’t write for too long now, I’m getting tired and I’m sick of correcting my crap spelling lol. Like you say at the end anon…seize the day

Hi Anon.

In many ways my dx was similar. Neuro number one was of the “probable” school of thought. He admitted it probably couldn’t be anything else but would not commit further. I would have left it at that but I had critical illness insurance that needed something a bit more definite. I asked for a second opinion and neuro 2 was prepared to come out and say MS on paper. For over a decade of little or no change I wondered if I had “pushed” a dx and that maybe I didn’t have MS at all.

There has been our difference – I hoped I didn’t and you have worried you did. I can’t imagine how hard this has been for you – always peeping behind the curtain for the monster that may lurk there.

I’m SP now so my dx was correct but all I can tell you is that the worry is worse than the actuality. I’m in a wheelchair. That would have shocked me to the core a few years ago – it is everyone’s worry. But really – it’s not so bad. Far from bad actually. What I’m trying to say is that things happen and we adjust, cope, get on with life. Whatever happens to your health it won’t be as bad as all that worry.

I hope you are able to look life in the eye and say “bring it on”

Jane

I’d like to thank each one of you for taking the time to respond to my post. As I have kept my thoughts/fears so bottled up for years, commiting it to writing was cathartic. But then to get such thoughtful and encouraging responses has been amazing. I’m attending a councillor for the last few months. In hindsight, perhaps her support helped me open up to my wife. I’d particularly like to thank you for the encouragement about our trying for a baby - all your responses have challenged me to choose life. Fear is such a debilitating condition. It’s made me reclusive, introspective and too self absorbed. But I suppose the counceling has encouraged to to face up to my fears (ordering a new MRI) and open up to others - including you all. Anyway, I’ll be lighting a candle and wishing each one of you peace of mind tonight.

Hello Accepting. Just noticed your message…lovely to hear you sounding more positive. Writing down your thoughts and feelings is cathartic. Having a counsellor and being more open with your wife is going to make life much easier for you in a lot of ways. Life’s full of ups and downs but its always good to have someone you love to talk your worries over with. I think you’ll make a great dad…so much to look forward to. Lighting a candle is such a lovely thought, Thank you. Love and Light to you