No demyelination!

Woo hoo! MRI results back. GP says no evidence of demyelination, just a couple of incidental findings. Don’t know what these are as she said she didn’t have a clue about neuron results. Feel really relieved. Just hoping neuro can come up with what is wrong with me.



Oh Paula that is BRILLIANT NEWS!

Make sure you keep going with Neuro to get to the bottom of it x mine just discharged me because im female of a certain age!! wtf!! lots of my symptoms have calmed right down now (apart from eyelid that has daily periods of twitchy ness, stiff/sore fingers, and feet/legs buzzing in/after hot bath and feet tingles when i sit down). Whilst Im not feeling as battered by whatever ‘it’ is, I’m trying to sort my back out ddd(degenerating disc disease) in lumbo sacral disc and the one above it whilst my head isn’t constantly buzzing… let us know what neuro suggests - when are you seeing him? x

HI, yeh, that is great news…but you still need to know what is wrong. When do you see your neuro? GPs rarely have enough knowledge to explain neuro problems. What are your smptoms?

Here`s a bit about my story, to see if it helps…in another life (!), when I was 45, (I am 63 now) I was fit and well, working full time and running WW classes…

My left leg became heavy and wooden like. I began to trip, stumble and fall. I also had arm spasms, bladder and bowel accidents. I let this go on for a year as I felt weight gain was causing it.

But after several nasty falls…including one when I fell into a glass doorway…yeh…ouch! I saw my GP and said I cant walk properly`.

She instantly said I ought to see a neurologist. I did that, had a myriad of tests and although PPMS was suspected, there was no proof. So I had a probable PPMS label.

Move on 7 years, when another neuro said I was too well (!!) for PPMS and changed my diagnosis to HSP…hereditary spastic paraplegia. It can mimic MS.

luv Pollx

Thanks Tingles & Poll. No date for neuro yet. GP has given me his secretary’s phone number so that I can pester them. I have my father & step-mum staying this week, helping out with half-term & the kids, and I’ve not told them that anything is wrong, so I’m keeping phoning the neuro until next week. Step-mum gets very emotional when drunk (which is pretty much most nights!), and whilst I’ve been absolutely honest with the kids I’ve made a point of not being emotional or a drama-queen about it. This means that they know that I’ve not been well, but they’re not scared about it. I fear that drunken nana would destroy that!

I’m a woman of a certain age too, Tingles, but I had a chat with my GP this week, and whilst she says that my hair thinning rapidly (boo hoo!) is menopause, my neurological symptoms aren’t.

Poll, it’s my right leg that has been misbehaving. It always has if I’m honest. First time I had a bad fall was when I was 16. I go through phases where my right foot hits the floor on the outside edge rather than flat, & before I know it, my full weight is on it, it’s rolled over, and I’m on the floor in agony. Thankfully I’ve never hit a glass door, which sounds absolutely horrendous.

This time though, it started with tripping in August. The front of my shoe just seemed to keep catching the carpet at work. Then it felt like glass in the ball of my foot, then there was something wrapped around my big toe (although there wasn’t really). None of this really bothered me though. It wasn’t until a few weeks later, when I woke up with a numbness to my foot, that I started to worry.

Few days later my foot suddenly felt ice-cold, and the numbness and coldness spread up my leg, towards my body. It was deeply unpleasant & very, very wrong, so I went to GP. GP found reduced reflex in right knee and weakness in right quads, and referred me to neurologist.

It’s been a rollercoster since, with the leg symptoms coming and going (although never completely). Most days my leg has felt heavy, and I’ve had to buy lighter shoes! I had terrible fatigue in November/December, which hit me mentally as well as physically.

Everyday since start of Jan, I’ve felt a bit better though. I now feel great, not even limping! Still can’t wear heavy shoes, but I think even the numbness in my toes is disappearing. What I have noticed is that my leg and arm muscles seem to tire quickly. I’ve been doing lots of exercise classes, but they don’t seem to be helping. I’ve also lost some of my dexterity in my hands. Minor things though, so I’m happy.