i feel lost

hello everyone my name is josie. i have been looking on this site for a little time now i have a look every day it does really help me but today i feel really lost and dont no were i am going to .i will tell you a bit about myself i stared haveing really bad headache in november then in januray i also started having tinnitus really bad when people talked they sounded like robots got sent to see nero in may for mri he said i had three spots due to three minn strokes due to me being a smoker and sent away i had got a list of all the things that had be happening to me like dry mouth,swallowing,water work,pain crushing inribs and a lot more he did not want to no just sent me home in tears.but when back to my doctors who is great and has help me alot in june i got rushed in to a&e because i could not talk properly had a lot more test they said i have not had any strokes .to cut a long story shorter got sent for lp and nerve test and now i am waiting for results and i also have to go and see that horrible doctor again i am so scared has i frett over everthing now i am not the same has i was and i dont no why sorry about my spellings hope you all am haveing a good xx

hello hun.

I recognise the lost feeling as I spent eons in limbo, then got wrongly diagnosed with PPMS for about 11 years.

I now am diagnosed with a serious and rare condition, which cannot be cured and has a 50% chance of being passed down to my offspring. I hate that part about it most of all. What parent wants to see their child disabled by something they gave them.

Anyway, enough about me…it`s awful when we have to see a doctor who isnt helpful and makes us feel afraid to go to the appointment. But it is great that your GP is on side.

Hang in there chuck and I hope things improve soon.


Hi Bellaboo

Ask your GP if it’s possible to be referred to a different Neuro? Failing that is there someone you could take with you for moral support?

Jan x

Hi Bellaboo, when you go for your neuro appointment take a friend with you, it’s good to have somebody else to talk over what the neuro has said, he’ll have your results & will probably go through them with you if you ask. Try not to worry because that’ll make your symptoms feel worse. Hope it’s not too long before you have some help, your GP sounds excellent

Good luck

Rosina x

hi every one thanks for your reply i am taking my lovely daughter with me but i still have not heard anything yet it has been 10 weeks to day when i had my lp i think thats why i feel so bad thanks again for taking the time to reply xxx josies