Hi all. Advice please.

New diagnosis and before diagnosis
1

Hi all, I’ve been suffering from tingly/buzzy hands and feet for about a year now, but put it down to go much I’d been climbing. I was under a physio for a shoulder impingement and she noticed my neurological symptoms and ordered an x-ray of my c spine(which was clear) and an MRI.

In april, whilst waiting for my MRI I developed a numb/heavy left leg and left side of face which lasted nearly 10 days and thinking back my vision went blurry around the same time for a couple of days as I remember saying to my husband I needed to get my eyes tested. This came and went and I got back to normal, although hands and feet were still buzzing, I almost cancelled my MRI as I didn’t think I needed it, but I was persuaded to keep appreciate.

MRI (6 weeks ago)showed multiple lesions around the ventricles.

I’ve recently spent 3 days in hospital,they treated me for a relapse of ms. I couldn’t think straight, was dropping things, stumbling, facial twitching, the numb left leg/face again and urinary retention. I had lp and I’m awaiting results, consultant feels that this looks like it is potentially ms and I’m to see him in 6 months. He offered me pregablin for my hands and feet, which I refused.

I’ve returned to climbing, walking and looking after my 3 boys on our farm but I’m finding I’m getting cramps in my thighs of both my legs, and that my toes on my left foot feel numb(but aren’t) and are being “pulled up” alot. I’ve also had a strange thing happen, once whilst out climbing and last night (midnight) when we had just got in from our drive back from France; I had a Sharpe pain on the left side of my ribs that was like a tight band around me that made it difficult to breath, the first lasted a minute the second episode lasted 5 mins. Edited to add, I also had an episode, whilst I was climbing hard, I became very shaky and confused, is this to be expected?

Is this something I need to let the go know about?

Thank you in advance, Holly

2

Hello Holly

It sounds to me that they’ve diagnosed you with MS but not suggested you take a disease modifying drug. Or they’ve diagnosed you with a clinically isolated event, which may or may not turn into MS. (The ‘wait and see’ non diagnosis!)

Regardless of this, it certainly sounds like you have been having further MS type activity, so waiting 6 months to see a neurologist isn’t terribly useful.

Have you been referred to an MS nurse? If so contact him/her and ask for advice. If you haven’t, see your GP and ask for a letter to be sent to the neurologist requesting an appointment much sooner than 6 months away. Failing all of this, phone the neurologists secretary and explain what’s been going on and ask for help in getting a sooner appointment. If the secretary says they can’t help, ask if you can send a letter by email to them and ask that it be forwarded to the neurologist. Or just write an old fashioned letter explaining what’s been happening to you, send it to the neurologist and ask for an appointment. One of these methods should work.

Sue

3

Hi Holly,

Let both doctors; GP and Neurologist know about the gripping around your torso; it is probably something affectionately known as the ‘MS Hug.’ You know it’s a bit more than a hug; can be like being gripped by Hulk Hogan; see The MS Hug: Understanding Girdle-Band Pain

I am not advising you to give up your climbing; but please only do easy climbs. I imagine you hanging from an overhead rock; like that girl in the Civic advert and your grip giving way. Don’t give up things you like/want to do. MS lays down certain restrictions and if you do not adhere to them; it is only you that will suffer.

Sorry, my luv but please don’t shoot the messenger.

Good luck and the sooner you get on a DMD the better; see Choosing and taking a DMD - perspectives of neurologists and people with MS | MS Trust

George

4

hi holly

oh you poor thing, that ms hug is what i call the grip of death!

magnesium oil is great for cramps and best of all you massage it in.

go away and see me in 6 months? is he for real?

chase up an earlier appoingment.

c x