Bloomin rubbish few days

Sorry but I need a moan. The facial numbness had just started to abate a little and has now come back…but this time in the left side of my face. And I have developed a really strange buzzing sensation in my right leg from the bum down to and including my foot. The dizziness has stepped up a level and is leaving me very nauseous…I know the neuro told me to stop taking the stemitil but am very tempted to take one. Am totally and utterly hacked right off.

Oh that’s not good. Poor you. The buzzing is horribly normal - I started it on 8th March and it’s never stopped since (changes in how much I can feel it though). Why were you told to stop the stemetil? Big hugs xxx

The neuro said something about masking symptoms and preventing remyelination?? To be honest I was so flabbergasted by her dismissiveness that I don’t think I took it in. Ps she’s on the tv tonight so everyone will see how lovely she is and wonder what the heck is the matter with me!! Great just great!! Hugs back Deb xx

Oh fantastic - when and what channel? I’ll definitely watch! I’m seething for you so I think she’ll feel my fire

Take the stemetil, she’s not worth the paper her drs certificate is printed on! Prevent remyelination? Pah. No one would be prescribed it if that were true.

Dxx

She’s on BBC1 at 9pm. It’s called Goodnight Britain and is showcasing her expertise as a sleep disorder expert. But honestly, you’ll think I’m barking…I’ve just watched episode one on BBC I player and she comes across really well. I took the stemitil an hour or so ago…within half an hour, the sickness had gone and the dizziness is better. Leg, bum cheek and upper thigh is still buzzing…it’s not exactly an unpleasant sensation though…my MS Nurse howled when I told her that. I am now understanding the machine machine on spin cycle “thing”!!

It’s also a bit like having a cat purring on you isn’t it. I’ll watch that tonight. I’ll still believe you don’t worry!

Classic…that’s exactly the sensation. Thanks Deb, I will nick your description.

What a strange thing to say! Stemetil will not stop remyelination. Perhaps she meant that your body wouldn’t learn how to cope with it (which can help remyelination) if it didn’t neeed to? Either way, it was a pretty useless thing to suggest!!!

Balance & vertigo can respond really well to physio and exercises so please nag your GP for a referral to neurophysio. It’s the exercises that will help the body to work out how to cope with the demyelination - and you can do them with or without the stemetil I would think!

Karen x

So, do you think I was right to sod the advice and take one? It has made such a difference. I’ve actually eaten something tonight!!

I would have :slight_smile:

It’s all very well medics dishing out advice, but they don’t have to live with the symptoms!

Do try and sort out physio though - it’s definitely better to try and fix it than just mask it with pills.

Kx

My GP rang the other day to see how I was and mentioned BBPV exercises. She said to have a look for them on the Internet. I haven’t yet but I am guessing that’s what these exercises are for?