Fed up and wondering what's the best thing..

New diagnosis and before diagnosis
1

Hi all,

I’m finding it really frustrating dealing with the neuro department at the hospital and am getting really fed up as I just want some help with these damn symptoms now… I went to see a registrar, who said I undoubtedly had a CNS disease, probably MS, and referred me for an MRI and to ENT as I’m getting weird hearing problems too… Went and had the MRI in early December, and since then they’ve cancelled two neuro appointments due to ‘unforeseen circumstances’ and promised to rebook … No news, so I rang them - they say the results haven’t been looked at yet and that they don’t know if I’ll need another appt!! I would have thought that with a definite CNS disease that was a no-brainer?

I’m trying to do things that will make me better - I’ve stopped smoking, taken up swimming, have been to yoga, am taking high dose vit B12 and D3 daily and am eating healthily, but need advice - the swimming makes my neck ache after just a few minutes so I have to keep stopping and wondering if I’m damaging myself rather than helping, and the yoga keeps making my vertigo come out - when I move my head forwards and backwards the world starts spinning, and again I don’t know if I’m making things worse or if I should push through the dizziness (though I also keep falling over which is embarrassing - I feel like Mr. Bean at the back of the class!). I wonder if I joined a class that’s too energetic (it’s vinyasa yoga) and if I should get into a more chilled form, or even try something else that doesn’t involve too much moving my head about - any advice is v welcome and needed! I just want to build my core strength, stamina, and fitness levels in general.

I’m so annoyed wondering if I’d seen someone sooner then maybe they could have given me steroids or something that would help (I’ve had them before for asthma and had no bad side-effects - just a lot more energy) and then I wouldn’t be left in this mess. I’m even wondering about just buying steroids from online, which I’d never normally do.

I don’t want to stop exercising but really don’t know what to do. My husband is talking about complaining to the hospital via PALS (and he’s the last person to do that sort of thing usually) - mainly to get noticed and hopefully make them do something.

Sorry for long rant but am just so fed up. Probably feeling worse as I just started a new job and am just tired and emotional tonight… Thanks you lot - good to know you’re there,

xx

2

How frustrating for you. Is your GP any use? He/she might be able to get things moving, and hospitals pay more attention to a doctor than to a civilian, whatever they say.

TBH, you have probably been doing yourself more good in the meantime than any specialist, however prompt, could have done you! Giving up smoking, eating healthily, trying to get a bit of exercise? Those are all fantastic things, and far more valuable than anything that comes out of a pharmacy, I would guess.

I get neck ache swimming too, but that is because I am so bad at it, and doggie-paddle along with my head in the air like a girlie because I don’t like getting water up my nose, or my hair wet. If you are swimming properly and getting neck ache, that is a different matter and you probably need some advice from someone who knows about swimming technique and can look at what you are doing. On the other land-based things, have you tried Pilates? It does the core strength and balance bit, but most of the basic exercises (the only ones I do) are done lying down and with the head staying still. Might be worth a try?

I hope that you make some progress with flushing that next appt out of the very sluggish system!

Alison

3

Too right. The steroid dose that tends to be prescribed for a short term blast in CNS stuff is industrial-strength anyway; that is quite problematical enough in a controlled setting with proper safeguards in place without running the extra risk of taking a dark Web-sourced dose cut with Vim.

A

4

Thanks both - feeling a bit less upset by the whole thing today… You both had some really good ideas - I think the vinyasa stuff I went to was too full-on so am going to book onto some pilates - thanks for the idea… and I don’t think I really would get the steroids online, but thanks for the reinforcement… and that vim comment made me laugh - so true! :slight_smile:

My swimming technique’s pretty dire, so I only do backstroke - didn’t think you could go far wrong with that but maybe I do need to get it looked at… or maybe I’ll just use the gym instead of the pool… will think.

Right, going to take it easy now and stop worrying… Thanks for help and hope you guys are ok,

xx