Hi everyone. im typing this on my phone as the internet is down. im sooooo upset, yet relieved. My neuro said that my lp was clear so no ms. Thats a relief but still no answers or meds. Its not fair that someone only 39 should lose bowel control and be scared to move because of balance and shakes. he did say thatMy bloods and lp showed inflamation but he doesnt know what this is. Hes ordered another brain mri to compare to last one. This is the story of my life…sorry but you just dont fit into a box. I cant stop crying. I need answers desperately. Love mandymoo xx sooooo sad and upset
Mandymoo, i really feel for you! I hope they find out soon for you as limbo is horrid (hugs).
((((big hugs Mandy)))) because limboland is a terrible place to be.
Try to keep in mind that your neuro is proactive and not giving up. It doesn’t feel like it now I know but you will get there. When I was in limbo my neuro said to me that better to have the right diagnosis than have him galloping off down the wrong avenue which could cause no end of problems. He was right of course but that didn’t change how I felt at the time
I hope you get some answers soon - in the meantime ((((((more hugs)))) are winging their way to you.
oh Mandy this limbo land is horrible at least you seem to have good neuro who as said above has not given up on you. sending lots of love, phone a friend and do something nice to try and take mind of it xx
What is the matter with some Neuros. If you have a lesion on your spine doesn’t matter how many times he does a brain MRI HE AIN’T GONNA FIND IT.
To even an idiot like me there are signs there that point me in that direction. From what you said every instruction comes from your brain and travels along pathways called nerves.
There are two distinct nervous systems in your body; the Central Nervous System (brain and spine; CNS) and the Peripheral Nervous System taking instructions to all parts of the body outside the CNS.
The spine is just a thin; bony; flexible tube that carries millions of nerves if a lesion appears in a place shown on this map it will cause problems where indicated http://www.makoa.org/scimap.htm
So a lesion could appear in the brain or in the spine. Being it’s so tightly packed in there sometimes the lesion can hide.
Add to this the fact that the NHS (who I think are the best organisation in the world) in vast majority only have 1.5 Tesla machines. To get a reasonable resolution you need at least a 3 Tesla.
Sorry to be so fatalistically but these are reasons why 15% of people do not show lesions at first.
Good luck; you never know one might appear next time.
Oh Mandy i hope you get some answers soon i really do ,i know how you feel,
Mandy… I am really sorry you havent had any answers yet. Please keep writing down symptoms and as your neuro sounds good, presenting him/her with these. I really hope you get some meds from your GP and some answers soon. Dont give up as only YOU know your own body xx
Oh Mandy big hugs! It’s horrible - on one hand you want them to find something so you’ve got answers yet the thought of finding out is also quiet scary.
Your neuro does sound like he’s on your side and is trying to get to the bottom of whats happened.
I really hope find answers Mandy. It’s so draining being in limbo.
Can’t really add to what has been said just wanted to send you big hugs Xxxx