Worried it's all in my head


I like many others have loitered on this site for a LONG time. I’m not sure i’ve ever posted, but here goes. In summer 2007 I started to get the most almighty migrain ever but it wasn’t typical of my usual migrains, it was behind my eyes and so painful I wore sunglasses till night even the living room light drove me mad. It got so bad i was admitted to hospital with posible meningitis, I was discharged 4 days later told it was a virus and i’d be fine. By the end of that week i had slurred speach and problems balancing which at the start were so bad, I was accused of being drunk (by an old lady) while i walked my kids to school. It seemed to last for about 3 weeks then started to improve, but i was left with balance problems, not so that people would particularly notice but enough for me to have to sit to slip shoes on or get dressed. I had a neuro appointment and was told he thought it was MS. I had an MRI and evoked potentials and didn’t see another neuro for 6 months to get the results apparently he likes his holidays. He may as well have stayed on his holiday, when i saw him he said “It’s stress” and waited for us to leave, when we asked what could be causing it he said “do you want it to be something serious” sarcasticly.

After this I vowed i wouldn’t go back again, to feel humiliated that way again. So when i started to get more symptoms i ignored them even when everyone else can see, I feel like a fraud and that all of my symptoms are in my head. More so when on a day to day basis I can feel so different, some days are terrible and I’m so tired I take the kids to school then sleep all day till I fetch them again, I cant walk properly cause my leg feels like it’s not mine and it gets tighter and tighter the more i push to walk. I’m frightend to drive now cause I know I cant see properly, and no amount of glasses are going to fix the fact that if it’s moving I cant track it with my eye’s. I’ve been dragged kicking and screaming back to the doctor who again said “stress”, but my mum pushed for a neuro appointment and i went last week. It was strange because, I was releved that when he did the exam he picked up on things, I’d blown off, as they got better, like right arm weakness, the eyes thing and the numbness in my face. Now I dont want to go back, he was brilliant, I had blood tests and he’s booked me in for an MRI and the longest he was willing to leave it without seeing me again was 2 months. But and it’s a big but, what if there’s nothing there again, I know in my heart that the episode in 2007 was the first time, I know i can’t go on like this, but weirdly I’m more scared that it isn’t MS and I’m going nuts than the DX. It’s not normal for a 33 year old to have to take turns out of dances (I line dance, it’s what i can manage) and sit down for a while after a dance, when an 82 year old spins like a top and dances every dance that evening. It’s not normal to think your pressing the clutch down in the car and hearing the gears crunch because no matter how hard you try that leg aint moving. It’s not right that I’m so exhausted after just walking to the school that I need a nap. For god sake I’m 33!!! Today I took the shame and used my father-in-laws old mobility scooter to go to the school, I felt better for it but so embarressed cause everyone looks cause of my age i suppose, although physically it made me feel better, emotionally I want to crawl up a corner and die. I feel like I’m losing myself, every day a little bit more of my soul gets chipped away, when i cant do something or someone mentions something, I have always been independant and strong and now, I suppose for the first time I’m scared.

Joanne xxx

Hi Jo - really, really sorry to read that you’ve been having such an unhappy time and that the first neuro was so dismissive and unkind to you. It’s great that you found the courage to go back after that, and that you are being taken seriously. I am waiting for a dx - got my appointment two weeks today - and I know exactly what you mean when you say ‘if it isn’t that, then what is it???’ Knowing what you’ve got gives you more ability to deal with it and plan ahead - you sound like the sort of person who’d do a great job of that, and, as folk on here say, ‘you’ are still in there. All we can do is wait, and try to look after ourselves as best we can. Well done for using the scooter - it must have taken guts but if it made you feel better and conserved a little valuable energy, that’s really important. I reckon most people would be concerned or a bit curious rather than having unkind thoughts - and stuff 'em, you’re the important one here! Your independence and strength won’t desert you. Good luck xxx


Hello Joanne. I’m sorry your feeling so bad at the moment…you really are having a rotten time. Sorry I can’t type for too long…not feeling great myself at the moment. Just want to say hang in there. See what the tests show and take all the help and support you can. I’m sure there will be many more lovely people writing on here with messages for you. All the best to you

It is so wrong that neuros can treat people like that! I’m glad you are now being taken seriously no matter how scary it is. I am undiagnosed too but today got some bad MRI results back (by post) so might actually get a diagnosis soon. It is horrible being able to do less and less every day and I so sympathise. There is nothing I can say except you are not alone. I am not yet at the point where I have accepted it, but others here have and I am sure they will be able to give us both positive words of wisdom :slight_smile: