Hello - in a very small voice

New diagnosis and before diagnosis
1

Hi everyone.

Not sure what I’m doing on here because I don’t know what is wrong with me. I’ve been really naughty and googled my b*ing symptoms even though doc told me not to, and that has led me to ms with a big question mark.

I’m a 48 year old woman with 3 young children (how I wish I hadn’t left that so late!), who is starting to feel like a 68 year old. A couple of months ago I woke up one morning and my toes were numb. As the day went on the numbness spread and by the evening I struggled to drive home. For a couple of days I couldn’t walk or drive, but then things got better, although the front part of my foot has never felt normal since. Since then I’ve had a couple of relapses, and actually I’m writing this from my bed feeling right hacked off with life.

I get very strange sensations in my right leg and foot, ranging from numbness to pricklings. My leg is incredibly weak - I was super fit, doing lots of cycling and attending spin classes, but now I can’t even stand for any period of time. Today it was aching like I had run a race, but I don’t see how nerve damage can make the muscle burn like that. At one point it became so tired that it buckled on me.

If I’m honest, I think I’ve had issues for a long time, but because I’ve always been like it I’ve assumed that it’s normal. How much I need to sleep, how my feet always feel cold (even though they are warm to the touch), how I randomly get pins and needles in my hands and feet, how when I’m reaching to put washing powder in the washing machine my hand always shakes at the last minute and spills it (drives my hubby mad!) are all family jokes. A few years ago, I noticed that my fingers aren’t as co-ordinated as they used to be, and fine control is difficult. I have suspected arthritis in my little fingers, and my gp told me that my fingers not moving properly are because of this, I’m starting to doubt him now, as my little fingers go through periods of being painful and stiff, whereas my fingers are always stiff.

Managed to see a different gp when my foot/leg problem, and she referred me as an urgent case to the local hospital. Neuro says I have a confusing list of symptoms (which I shouldn’t Google!) & he wants to start with an MRI. He referred me to radiology as an urgent case, but unfortunately the scan will take an hour & the first available hour long slot they have is end of January.

I’m now in limbo. Things seem to be getting worse and I’m scared. I’m a college lecturer, so getting rest during the day is difficult. We live in a rural community, so driving is essential for me. If I can’t drive I can’t get to work (or drop off/pick up children from childcare), and unfortunately I have the pleasure of being employed on a zero hour contract (God bless the tories) with no sick pay, or job security if I become unreliable. I’ve even asked the college if I could be allowed to used the (underused) disabled spaces near the building in order to reduce the walking I have to do, otherwise I face quite a hefty walk carrying books etc from the main car parks. They said absolutely not as I don’t have a blue card, and no bending the rules even if you have a doctors note stating that the college needs to help me reduce the walking I have to do I feel utterly stressed out and have no idea how I’m going to cope with waiting until end of Jan for the scan.

Gosh, what a real down in the dumps hello this is! Haven’t really got anyone to talk to (don’t want to worry my hubby, and if I try to say the words out loud I might start blubbing), so I’m off-loading on to you guys.

Need to slap a smile on face and get downstairs as I can hear children demanding mummy! Thanks for being such good listeners :slight_smile:

2

Everybody Googles their b*ing symptoms and Dr Google thinks everything is MS. Which doesn’t mean you haven’t got it, of course, but it doesn’t mean you do either. But you know all that. For sure, it’s a worry, but odd symptoms, once one has taken notice of them, are always going to be a worry until they have disappeared/been satisfactorily explained, and I don’t think there is any cure for that but time. You have set an investigative process in motion - and that in itself is a big hurdle to have crossed - and it is really now just a matter of letting that process play itself out and reach some sort of resolution. You have done your bit by piping up in the first place.

The time between now and January will pass faster than you think. ‘Keep busy’ is usually good advice, and from what you have told us about your life, you should have no trouble at all doing that. If your schedule allows it, you might think about telling the MRI people that you are available at short notice if they have a cancellation. On the other hand, there is something to be said for just getting a date in the diary and then shutting the mental door on all that until the date comes round - being on stand-by for a cancellation does, perforce, keep the mental window open, so to speak; you will be the best judge of whether that would help or hinder peace of mind.

In any case, there are plenty of people on here who are familiar with the nagging uncertainties that you face, and it is a good place to come to find people who share your concerns or at least can remember what that feels like.

Alison

1 Like
3

Thank you Alison. I’ve been far more positive today. It’s amazing how therapeutic a ‘getting it off your chest’ session can be. You are totally right about how fast time will past, as Christmas is hurtling towards us. Thank you for your kind words.

Paula

1 Like
4

Hi again Paula…I read your later post before I saw this one!

So you`ve answered my question!

I can now see what a busy schedule you have…3 kids and a demanding job…I think your employer was really meant about you not using the disabled parking spots…especially if they are underused…nasty sods!

You can talk to us about your worries love, but please dont let yourself get all bottled up…you need a close friend/relative to give you a hug when you are feeling down.

Maybe your hubby would rather know you are worrying and help you share the load.

Hope you can take a bit of time for yourself and rest when you can yeh?

luv Pollyx

5

Thank you Polly. I’m taking things much easier already. I’ve pulled out of my STEM ambassador role with the local school & I’ve stopped being a cub leader - I absolutely love working with kids, so it was a tough decision. I’ve also managed to offload one of my classes and I’ve told the college to reduce my timetable further in January, when our timetables change. The college is a horrible place to work but the staff I work with are lovely, and are very supportive. Tomorrow is my day off, and I’m really looking forward to it. I get a whole 6 hours to myself :slight_smile:

6

hi mali

i agree that the college are being mean by not allowing you temporary use of the disabled parking space.

however it’s great that your colleagues are supportive.

could you explain to them that the disabled parking would be a great help because maybe they could save you a convenient spot on the non-disabled car park?

otherwise one of those crates on wheels could be useful for carrying books.

enjoy your day off

carole x

7

Carole,

What an amazingly fantastic idea! Thank you. I could only see the problem and not the solution : )

Paula