Hi! .......waiting for diagnosis ....

New diagnosis and before diagnosis
1

Hi, I’m new here so sorry if I waffle on a bit but I’d really like to talk to people that are going through something similar to me rather than nagging at friends and family that just don’t understand!

I am waiting for an MRI which is exactly 2 weeks today and a neurologist appointment 3 weeks today which can’t come soon enough!

The reason for this is the 2 separate doctors I’ve seen are almost certain my symptoms are MS.

It all started 4 weeks ago when I woke up with u numb finger, as I was looking after my grandson at the time I didn’t really have time to think about it, it was only the next day when it was still like it and my middle finger and thumb tips had gone too that I started to worry. I Googled it and decided I had carpal tunnel and would go to see my GP on Monday morning (this was over a weekend).

On Sunday evening my right thigh joined in, feeling rubbery and almost wet and by the time I saw my GP it was my smallest 2 toes on my right foot.

This doctor said he’d send me for an MRI to rule out MS.

Over the following week more and more of my hand and leg went numb and /or pins and needles. My hand and foot going from freezing cold to burning up, feeling like they are much larger than they actually are and like they are being pulled tightly.

I remember at one point saying that if my foot would just get bearable I could cope with my hand, how wrong was I, my hand is now that bad that I manage to ignore my foot!

I went back and saw a different GP after Easter who was adamant it is MS especially as he reminded me that last June I saw them because i woke up with blurred vision that went on to last several months. At the time it was just put down to the fact I had an eye injury 20 years ago which has made my eyesight bad, (acute iritis and herpes eating away at scar tissue!) and that the other eye was worn out from doing all the work, looking back that blurry vision has now gone!

At the moment I just feel in limbo, waiting for a diagnosis, feeling like a burden especially at work as I am struggling but have no diagnosis yet.

Over the last week even more of my right side has become numb or tingly (although I think the word tingly doesn’t do it justice, making it sound like a tickle- in some places it is so painful) now it is my whole leg and foot, ( and bum cheek!!) my whole arm and hand and the right side of my torso. A tiny part of my face around my eye socket also feels different to the other one, I have also noticed my eye weeping a lot because of this too.

Do these symptoms/ feelings ring true with anyone? I’d really like to hear your stories to know I’m not alone and maybe gain some hope that they’re not permanent!

I’d also just like to chat with people going through the same thing

Thanks, Julie

2

Hi Julie and welcome,

Whatever you do my luvs don’t go Googling around; there is some strange info out there. On saying that this will give you some info about diagnosis mult-sclerosis.org the bloke actually knows what he is talking about.

As far as work is concerned lots of help available; see Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK and you don’t have to be diagnosed.

It is perhaps jumping the gun a little to assume it’s MS; could be lots of other complaints yet but your Neurologist and tests will narrow the field.

Good luck not long to wait and purchase a copy of your MRI; about £10; always handy for comparison with future ones as sometimes they lose theirs.

George

3

Hi Julie

Well the good news is that you’ve gig the MRI and neuro appointment very soon. I know it probably feels like it’s ages away, but honestly, if you read some people’s waiting times, yours is positively zippy.

I must be honest and tell you that my very first MS symptom was a numb finger. I then had it going down my legs, tingling etc (you’re right, it’s a stupid word).

But, as George said, there are so many symptoms associated with MS that are also charged with other disorders. So, you have to try and hold on to the fact that until the neurologist tells you it is MS, it’s not.

The other bit of good news is that even if it is MS, you can fairly quickly be started on a disease modifying drug (DMD). These are designed to reduce relapses and reduce the severity of relapses. So life has moved on in the 20 years that I’ve had MS. By no means will it cause definite disability.

Keep coming on here, have a look at the MS Society info about MS, but try to avoid googling it. That will only worry you.

Sue

4

Thanks for the advice George and for the links, I will have a look later on.

Its good to hear from people who know what’s going on, I have managed to stay away from Google lately as I agree there is all sorts of rubbish on there!

I’ve definitely not labelled myself as having MS yet, I just tell people some of my wires are a bit jumbled and I need a rewire!!

To be honest whatever it is i will deal with head on when I have answers, my main concern isn’t the big picture at the moment it’s just these awful symptoms! Good to know I’m not alone though.

good to hear from you George, have a good evening, Julie

5

Hi Sue

Thanks for your message, like I said to George I feel much better hearing from people that have experienced similar things and I am avoiding google as much as possible now.

I was quite surprised that I got appointments so soon (especially as I waited ages for an MRI on my ears a few years ago) but I did keep going back to the doctors and whittling them.

It still feels like an eternity though and the feeling of limbo is worse than actually finding out it’s MS or something else. I imagine if it is MS or any other condition it is going to affect me long term and I’ll deal with that once I’m over this hurdle and like you say if it is at least I can get help.

I’ve always been a very strong person and have taken whatever crap life has thrown at me but this has really knocked me sideways, I’m not used to feeling so useless and actually scared that this awful feeling is here to stay.

You say your numbness started in your finger too, I know everyone is different but much did yours spread and how long did it take to come back? Also does it often reoccur? (Sorry don’t mean to get personal, just need a glimmer of hope!)

thanks for your advice and I will definitely keep coming back on here.

Kind regards, Julie