Been for first neuro appt today

[BradfordianSteph]

Been to visit neuro for first time today having been referred from gp.  Says my rubbish body symptoms aren't migraine related apparently there's a problem with my central nervous system lol like I couldn't work that out.  My Babinski reflex works when it shouldn't, my legs don't work when they should.  It would seem my left hand doesn't do the same as my right.  My balance is like it is when I've had 2 bottles of wine and I don't drink.  I have double vision and a numb face.

Anyway he gave me two wonderful pearls of wisdom that I thought I'd share.

Try not to fall. (I might be ok just collapsing to the ground but if I hit something I might injure myself)

Be careful in the dark!  (apparently I'll have less balance when I can't see)

Anyway in his defence, after trying to half heartedly convince me to be admitted to hospital and me refusing he has referred me for an emergency mri.  So I have to wait till someone rings or writes to me with a date and time for that.

I couldn't see the point of staying in hospital when I'm not really ill.  I don't need a nurse to do stuff for me I can take myself to the loo (every 5 mins) and at home I can see my husband (both of them - double vision joke), my children and I can cook and clean!  No wait I've changed my mind arghhhhhhhhhhhh.  Seriously I'd rather be in my own bed and have internet access and read books and have a bath in my own dirt not someone else's.  

I'll keep you posted but I feel ok in myself so not really worrying.

Love Steph x

[BradfordianSteph]

Thanks for your support so far.

Got MRI through for this Wednesday lunchtime so will see what that shows.

Got some of my feeling back in my legs and walking is a bit more normal today but still dizzy so I look like I'm walking on a tightrope.  Eyesight still double (that will be two weeks tomorrow) Just to keep it fresh though my left arm tingly and fingers numb feels weird.

Saw my normal GP today too.  She talked me through a few things said she couldn't do anything much about anything for me until I've had MRI.  Bless her she apologised for being on holiday when I needed her (when I got double vision and my legs kept giving way).  Told her she was never allowed to have hols again (joking with her)  she says to come straight back in if I need her but agreed with me that staying in hospital probably wouldn't have done me any good.

Oh well.  Here's to Wednesday MRI brain and spine.

Love Steph x

[silkcut]

Hi Steph

It sounds like you have a very good GP - lucky you! She's gold dust! Good to hear you're having brain and spine MRI.

I wish they'd get a consensus on migraine sx! I've had these sorts of sx for months/years at a time, and still been told it's 'migraine'.

Hmmm...'not uncommon for migraine sufferers to end up with other neuro probs'...does this tell us that migraine is actually a serious disease?!

Just a thought, you might want to take advice before making a complaint.  But anyway, my advice is to keep scrupulous records of each and every contact you have with all NHS staff. Voice recording recommended.

I'll join you at the Ministry! Specially at the mo when I'm wobbling all over the place!

bestest
sammxx

[BradfordianSteph]

Thank you for your support.  Yes they are doing brain and spine.  My symptoms are improving at the moment lol  my double vision goes for periods in the day yesterday and so far this morning and the feeling is coming back in my legs and face.

Ah its all good fun.  In my gps defence I think I have presented with migraine symptoms for the past year or so, she's a gp with an interested in neuro so she's done loads of quick different neuro tests in that time and reacted according to what they've shown.  I don't know what's going on I suspect I have relapsing remitting ms the neuro did suggest that some of my longer 'migraine' attacks may have been something else where they've lasted for a couple of days but he said it wasn't uncommon for migraine sufferers to end up with other neuro problems.  He didn't seem enthralled about committing to any dx without a mri.

Who knows, they seem to be doing what they can within the UKs nhs system I'll start complaining if it takes too long for mri I guess.  Difficult to tell if they could have done more without a dx and an mri at this point.

I've always wanted to go on a cruise and I feel like I've just stepped off one as the floor seems to be moving all the time.  At least if my vision returns for longer than a few minutes at a time I'll be able to go out with my silly walk.  Might watch a bit of 'Ministry of Funny Walks' on Youtube so I don't feel alone.

Anyway, I'll keep you up to date.  

Love  Steph x

[silkcut]

Hi Steph and welcome

I thought you must be in UK from the neuro's pearls-of-wisdom. Also it seems to be common that neurological sx are dx as 'migraine'. It's cheaper and easier.

Well done for sticking to what you want - an MRI. Please check that they're doing brain, neck and at least upper spine.

It's good to hear that the system's moving so quickly for you. I hope you get in to that scanner asap!

Please do keep us posted and don't hesitate to ask any questions you may have - Limbolanders are brilliantly supportive and have loads of experience/tips.

bestest
sammxx

PS - neurologists are very good at defending themselves....maybe your precious energy is best used by looking after yourself first! ;-)

[helen41]

take care of yourself. I hope your testing comes quickly

[jibjen]

Please let us know how you make out with MRI........