Where do I turn?

New diagnosis and before diagnosis
1

Hi all.

Im new and unsure what to do.

Approx 3.5 years ago I started with the tingling in the fingers and feet, for all my feet did go back to normal, the hands still remain numb and like they don’t belong to me at times. Because of this I seen my local GP who referred me to the local hospital. After a few tests and an MRI. They advise me that I had lesions in my brain and neck. Unsure of the correct terms etc. MS was mentioned but they made me an appointment for the following year to check me over again.

I felt fine and a healthy and a regular gym goer and with my busy working/mum life, it didn’t really cross my mind. I was planning a wedding and we did get married in October 2016! As we planned to extend our family, the consultant did say that he wouldn’t give me any treatment and we would discuss this in the next appointment, which was June of this year. At my appointment and 34 weeks pregnant with our twin girls. He advised there wasn’t anything he could really do until the babies arrived, which I agreed with.

The babies arrived 30/6 and all was well…however a few months prior to this I was exhausted (maybe a mixture of carrying twins and MS but who knows), unable to walk much due to a kind of heaviness in my left leg. The only way I can describe this is, it feels like my foot was too heavy and it would slam down to the ground on every step and on bad days it would be like I was dragging it about. Stair became a nightmare some days. I also have noticed that some days I struggle to speak, although my words aren’t slurred but it aches to talk. I also sometimes get a tingling in my scalp as if someone is pulling at my hair.

I have called the consultant and they have advised that they will send for another MRI and then following that an appointment to see my consultant my issue being it could be 3-6 months before I get my scan and then a few weeks/months following for my app with the consultant.

What do I do in the meantime? Over the counter pain killers don’t help as I’m not in really too much pain but it’s becoming an issue when I can’t walk the 0.2 miles to my local shop or the walk from the car lark to the school to drop off our 5 year old.

I worry when she brings in homework where we have to go on nature trails because i physically can’t do it or when kids party’s request all parents to join in to the hoki poki. I have a girls trip coming up and I’m even thinking of cancelling because I can’t cope with the stress of it all.

Is there anything anyone recommends doing to help me with my walking or a pick me up until I finally get my appointment? Is anyone else in the same boat as me?

Many thanks.

2

Hi

It sounds like you may have foot-drop or the early signs of it (often described as foot-slap). It’s where your perineal nerve that goes down your leg to your foot is damaged and basically doesn’t transmit the signal from your brain to you foot to make it pick up. Or makes it ‘slap’ down too fast because it just won’t hold up for long enough.

There are things you can get to help, see if you can get a referral to a physiotherapist. In my area we have a community neuro team which include physios along with bowel and bladder nurse and OTs.

If it is foot-drop, the physio might be able to refer you for FES (Functional Electrical Stimulation), or can get you a simple ‘foot-up’ device that attaches to your shoe, or refer you to your NHS Orthotics Department.

You could also be referred to a speech and language specialist.

Your GP or MS nurse should be able to help you with some of this. If you don’t have an MS nurse, then phone your neurologists secretary and ask for contact details.

Sue

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3

Your GP should be able to prescribe something to help with neuropathic pain. Some GPs are nervous of touching anything MS-related and prefer that everything is done via the hospital specialist under whose care you are, but I understand that technically it is supposed to be a joint effort between the neurologist and the GP, so don’t let yourself be fobbed off. I hope you have a good GP who is prepared to pitch in and help you - they are totally worth their weight in gold.

As for walking, well, at the risk of suggesting the obvious, a hiking pole is a very good way of getting around more quickly and securely if you are inclined to trip or waver about. It doesn’t look too ‘old lady’ and is, in any case, a better look than lurching around looking as if you’ve put too much gin on the cornflakes.

That’s an awful wait you are facing, really it is - poor you! If you haven’t already, do make sure that the appointments people know you’re on hot stand-by to jump at the first sniff of a cancellation. And follow that up with a polite phone call now and again to keep you in their minds.

Good luck.

Alison

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