Forum

From Bad News Comes Good

Hi guys,

As some of you know - I’m a newbie to the new group - only diagnosed PPMS a few weeks ago.

Well - one thing my husband said to me in the 3 years i’ve been in limboland was if I DID get diagnosed with MS then he would take me to New York as I have always wanted to go.

So - not only are we going to New York (wheelchair in tow) but he also got down on one knee and asked me to marry him again! so after 21 years - we will renew our vows and (2nd) honeymoon in New York in December!

Needless to say its certainly been a rollercoaster weekend.

Hope you all are having a good one too

xxx

4 Likes

Lovely news, the renewal not the MS

Jan x

1 Like

Wow what great news! And what a great husband!

Pat xx

1 Like

Oh that’s lovely, I am so pleased for you both.

It’s good to turn a negative into a positive…well done.

Pam x

1 Like

Lovely news

J x

1 Like

thank you everyone - i truly do have an amazing husband - have to admit i’m very blessed! xx

3 Likes

Wow, that’s lovely. What a great husband you have, you’re a very lucky lady. Enjoy your honeymoon and remember that the wheelchair is only a tool helping you get around, don’t let it bother you.

Cath x

1 Like

That’s wonderful, something for you to focus on and look forward to!

Take care,

Nina x

1 Like

Have a great time…two happy people…nice!

pollx

1 Like

Great news.

You both sound amazing to me. I hope you’ll post about your trip.

Steve.

1 Like

Commiserations on the MS but a huge congratulations on the renewal

Sonia x

1 Like

thanks everyone - i’ve thrown myself into it - new york booked, venue provisionally booked - dress ordered - too long to wait til december now!!!

Thank you for all your good wishes

xxx

1 Like

Hi Tinkerbell,

How lovely, that is really something to look forward to.

They seem to have taken a long time to diagnose you and I would be interested to hear your story since you first noticed symptoms. I am in lmbo and have been seen regularly by neuros for 5 years now and 2 years before that was nagging my GP that something was up.

Have just seen a top MS neuro in London and he thinks MS is likely. Wants to do more tests before confirmation. He basically said it is more likely to be an unusual presentation of something common as opposed to an unsual condition.

Moyna

2 Likes

Hi Moyna,

sorry to hear you’re still in limboland - its the worst place to be - a diagnosis - any diagnosis at least enables you to deal with it and move on.

My journey started 3 years ago in February - I was at work when blurred vision started in my right eye and within a couple of hours I could hardly see anything through that eye. I work next door to a shopping centre so i nipped over to Vision Express where they sent me straight to hospital. Optic neuritis was diagnosed and i was referred to a neurologist. 3 years on i still have blurred vision in that eye and no peripheral vision.

In August the same year i started experiencing pins and needles in my right foot which gradually spread up my leg and would have periods of heaviness where my leg just didn’t seem to want to work. I would also have times where my right arm just didn’t seem to belong to me and wouldn’t co-operate.

In the November - i had my “big” episode - i went to get off the couch and my right leg just collapsed underneath me - i couldn’t walk. It was no better the following morning so my husband took me to the GP who referred me to the hospital. The neurologist told me clinically i had RRMS and was started on IV Steroids. However - 2 days later I had an MRI which showed no lesions so the diagnosis was withdrawn.

I was wheelchair bound for a few weeks, then moved to crutches but it took me approx a year to be able to walk unaided but i have been left with right leg drag and foot drop.

it was only through seeing a new neurologist at the end of last year who did SSEPs and re looked at my MRIs who finally gave me my diagnosis.I now have spasticity in both legs, cannot walk any distance without being exhausted, suffer bouts of fatigue that last weeks rather than days and am now finding driving a strain on my arms. I work 3 days a week - when i manage to make it in but my employer is incredibly supportive.

But apart from all that -hey - i still have a lot to be thankful for - takes a lot to dull my sparkle!

I hope you get your diagnosis soon - keep pushing the Neuro - sending you big hugs xxx

1 Like