I don't know quite where to start and cannot actually believe I have plucked up the courage to write on here (perhaps the glass of wine has helped!). So, I woke up one morning in Feb with a strange feeling in my fingertips which felt like 100's of papercuts all over them. I went to the Drs who did the usual blood tests. One thing led to another and I got referred to a neuro and 2 lots of MRI scans on my brain, neck and spine later - I went to see my neuro last week who said I have a suspected lesion on my neck. He did say it could be infection but to me it is clearly a lesion and what with mysymptons - tingling hands (plus I had numbness from waist down for 4 days at the start but this has now gone) and what I gather to be the l'hermittes sign (my legs tingle when I put my chin to my chest) I am clear it is MS. My neuro says they cannot officially diagnose MS until after 2 relapses or I have to have further MRIs in 3 months time. This then leaves me in limboland. I am absoloutely petrified and I suppose in a state of shock. Everyone keeps on saying "try not to stress, live your life, blah blah" but they are not the ones with this hanging over them. As I am not diagnosed it means I don't have anyone to talk to and feel so alone. I have fab support from my family and friends but feel like I have let them down. I feel like it is a life sentence but people keep teling me I will be fine. How do I know what kind of MS I have and what it will be like? I just feel so scared.
Hello and welcome Emma.
I am afraid to say there are many in limbo land,but you have come to the right place for a chat and a listening ear.
Your family and friends are right,if you did have MS stress is a bad thing.It can make MS symptoms worse.
Your neuro maybe right and its an infection.There are so many things that have similar symptoms that mimic MS.There are diffrent type of MS.Many people who have it lead normal lives,work and take holidays.I have a friend who has mild symtoms and she does all of the above and even jogs several miles a day.Having MS is not a life sentence.You have one lession and may not get any more in your life time.MS can be intermitant,like now you feel you have the symptoms then they pass then you have no other symptoms for many years and again go about normal day to day things.
I and many others know how stressfull all this can be and the neuro is just following protocol.
I feel for you I really do, as I too am in limboland and scared, I too listen to the well meaning relies saying not to worry it wont be MS you will be fine just carry on blah blah blah... There not the ones who think about it everyday and worry what it could mean to us if we were to have it! I just keep going as I have no other choice, I dont see the neuro for test results until July, but last time i saw him is said he thought It was definately MS? I dont know how I can help but the guys on here are great and theres loads of advice and support so youre not alone! take care and try not to let it consume you as ive come to realise if i do have MS I cant change that, but I can do everything in my power to try to accept it and control what I can with meds or lifestyle etc... Good Luck!
I am also in limbo awaiting lumber puncture following MRI. I understand your worry but jelly bean is right about stress making things worse.
I have no words of wisdom just wanted to say hi, be kind to yourself and lean on family and friends, real friends will want to be there for you and you have in no way let them down.
I really feel for you. I'm a fellow limbolander too. Had two MRI's with non-specific sub-cortical lesions. Now my neuro says I've had an episode of spinal inflammation though no lesions visible in the spine on MRI. His words were get on with it, your fine just ignore. The reality is it's very hard and is worrying.
I've tried not to let it over take my life. You can't go everyday thinking if something news going to happen. I'm doing what I can to help myself - eating healthy, yoga etc So at least I'm in some form of control and I guess I've also accepted that if it is MS that it doesn't mean the end. As Charlie said - there are many MSers that live relatively normal lives.
I know it's hard but hang in there. We're all here for support. And remember MS is just one of many things this could be - your neuro is quite right to say it may or may not be MS.
Thank you for your responses and support. I think I am just finding it difficult to come to terms with as it was only 5 days ago the neuro said he highly suspected MS, which even though I had suspected myself, it was still like a bolt out of the blue if that makes sense. I cannot even start to tell you how much comfort I have got from reading this Forum and to know that there are others out there like me.
I also feel really lucky that I have two young children so they help to keep my mind focussed during the day and it is in the evenings when they have gone to bed that I feel at my worst. The neuro did give me amitriptyline which has been a godsend in helping me sleep - it hasn't helped with the tingling but I have only been taking it 5 days and I know it takes time.
I’m another limbolander and your right it is scary. You seem to have a great neuro, hang on to him as they seem to be few and far between!.
I know what you mean about telling you to get on with life. It’s easy to say it when you don’t live with it.
This site is amazing as are the people here, I have had so many questions answered and a huge amount of support.
Welcome from me too.....no longer in limbo but I can still remember what its like.
Your emotions will be on a rollercoaster ride,and you will probably wake up each day with it as your first thought and carry it round most of the day.This is where letting it all go on here comes into its own.,but do remember to talk to your family and friends aswell.
The ms society has good information packs that you can download to help you with some of your questions,but as far as knowing which type you may have it is a wait and see thing....much of everything to do with ms is wait and see. It isnt a fob off it is the nature of the beast.
You can also guarantee that if it is ms yours will be unique to you. There will be similar symptoms to one person but non of their other symptoms apply.
Take each day as it comes and as nikki says fire away with questions.