Can't stay away!

Hi all! I’ve been awol for a bit: trying to pretend there’s nothing wrong with me; to free up more time off the internet and forget about trying to find a diagnosis. But I’m drawn back to you guys and have been dipping in to see how you all are…sooo here I am!


Lovely to see you back Debs, was wondering how you were, and hoping all is ok xxx

I was thinking about you just this morning and wondering how you were. Was planning to send you a pm, but got drawn into making up a load of Ikea furniture instead! So you sort of beat me to it :slight_smile:

Nice to see you back :slight_smile:

Karen x

Welcome back. Debs xx F.

Hey all, it is good to be back! Missed you guys. Have done my fair share of Ikea building too since we moved house :slight_smile:

Medical update: the whole breast lump scare was thankfully unfounded and now my blood has been sent off to check for sarcoidosis but probably I’m purely neurologically defunct! They guess functional for lack of anything else but I don’t really fit that box convincingly either so diagnosis for now is ‘complex neurological disorder of unknown cause’. Ho hum.

I stopped my drugs to see what I’m like ‘naturally’: I’m still buzzing and burning and have tight achey muscles bordering on painful but am having less jerks than previously. The ping still goes through my head and the pressure behind the left ear in a line up from my neck is still there. Walking up slopes is very difficult and leaves me walking weirdly in a kind of stepping way at the top. Lots of stairs do this too. Is this normal in the neurological world or am I horribly unfit? What a weird lot we all are!

I’ll stick around now


Hi Debs Thank goodness the breast lump was nothing to worry about. Sorry they can’t really find out what is actually your problem. So are you going to stay off the meds or will you have to go back on them? Glad to see you back, Teresa xx

Nice to see you back and the lump was only a scare.

Are you due any more tests or neuro visits?


Hey Deb

It’s so good to have you back! I’m so pleased to hear that its not cancer. What a huge weight off your shoulders. I can agree with the - us being a bunch of misfits - maybe it’s just time that will show what… or maybe there’s something new that doctors haven’t figured out. Who knows?



Hi, glad to hear the breast lump wasnt anything sinister. Bet youre relieved, eh?

I had a letter today, telling me my 17th Oct is cancelled. No other date offered as yet. Dunno when I`ll get the lp results now.

My dx is like yours......spastic paraparesis…cause unknown I daresay therell be a club for the likes of us medical enigmas somewhere!

Like you also, I can`t stay away. I need my cyber family fix most days!

luv Pollx

Aw, it’s like coming home, you all make me so cheery!

I think there will be a name for us one day, the neurologist said (and I quote) “the problem is the brain is such a complex thing we barely know anything yet…you basically need 95 out of 100 people to turn up with the same set of symptoms and then we can give it a name and you’ll be diagnosed with something.”

Would be boring to be run of the mill surely!

You asked about whether I’m going back on my meds Tree - I went back on yesterday as the pain was difficult to bare at night, I thought I hated the woozy feeling but I slept like a log and feel fab today so yes I’m back on them. They also said I had to go down from 125mcg thyroxine to 100mcg because my stimulating hormone was only 0.7 but I felt so knackered I’ve upped it again. My stimulating hormone just doesn’t work, they’ll have to accept that. Originally my thyroid level went right down to 1 so lowering my thyroxine is a crap idea, it does nothing by itself.

Not sure who to see next - think I’ll just get on with life as best I can, which is easy when well but sure I’ll change my mind if I get very ill again.

I’ll try to catch up with all your stories soon Dxx

Glad you have gone back on the meds if they help Deb. You definitely sound very ‘up’. Good for you - long may it continue. Teresa xx