trying to be patient

Still waiting for my first neuro appointment it’s been 10 weeks since the doctor reffered me been to see her twice since as im getting worse she has emailed neuros secretary but nothing is it normal to wait this long

Hi Sparky I 'm not sure but I know we were referred at about the same time and I have a date it isn’t until 17th September but at least I know how long my wait is.Have you looked up the hospital you have been referred to on NHS choices you can find out on there how long they reckon an appointment takes before you are seen my states 8 days!!! you can make a comment on the page I did. Try ringing the secretary yourself if you know who you are seeing Good luck Sue

Thankyou sue for your reply i dont know which hospital yet could be one of two i will ask my gp on Friday because if I’ve not heard by then will be ringing the surgery and i will do as you suggested Thankyou for that glad you’ve got your date even though it’s a long time a way hope all goes well for you. Lynda

I was told that all initial neuro appointments take between 4-6 weeks and the consultant will prioritise depending on the info the doctor passed on. Mine was 5weeks but now have another 4-6 week wait for my scan, 5weeksnon and have herd nothing. It really is frustrating I know as you just want to know what’s wrong. Like stellabean said you could ring the hospitals and ask how long their waiting list is. The doctor won’t push you appointment apparently as it is down to the neuros when the see you.

I i rally feel for you with this long wait. Unfortunately 14weeks on I still have optic neuritis and am still being told to wait after my scan. I no they have to prioritise but it’s so difficult when you have to life your life with the symptoms we have and no diagnosis. Thank goodness we have forums and friends.

I hope you hear from them soon and you feel better x

Thankyou sammy yes thank goodness for all the lovely people in this forum it’s made me realise im not alone fingers crossed it wont be much longer and i know this is just the beginning of the journey all the best to you x

Rang doctors surgery today and the secretary chased up my refferal they have recieved it and i should hear by the end of july when my appointment for neuro is it is my first appointment so its classed as routine. Meanwhile things are getting worse for me this is my second attemt at posting this as my fingers wont behave this been happening for the past week now its weird feeling not painful but annoying just thought id update wishing you all well as can be . Lyndax

Hi Sparky glad you managed to chase up the appointment it might be routine to them but to those in limbo it is far from it, I made a complaint to NHS direct as the site says to go where I am referred is 8 days from referral to first appoinment they said it was due to me being referred directly and depended on what GP had written if he gave impression not much wrong I would wait a long time. Saw GP today and made the point that I am getting worse and fed up of waiting his reply was even if he tried to refer me now as urgent I would end up waiting until October so it looks like we just have to wait and be patient little patients. Good luck Sue

Yes sue looks like that told myself not to keep dwelling on it wont help.hope you get sorted too soon wish you wellx

I waited since March since my referral, I have my initial appointment tomorrow, x the time will come, let’s hope it’s not to far off for everyone, waiting while having these horrible symptoms is like tour meant itself.

the not knowing is scary, the anticipation that once you get your appointment ,are they going to take you seriously.

I feel as though my Dr didn’t believe me with my symptoms which have progressively got worse since oct, it was only two weeks ago when my arms went heavy that she looked at me and said “good job you have neuro soon, it’s looking more like Ms now”

i was the one who begged her to refer me to neuro, as had heavy tingling legs, painful lower back, and intermittent tingling in my arms amongst other symptoms for months prior to this date,

i had my own business last year and was very hectic, all I got from my Dr was you need to slow down, maybe your body needs a rest…mmmmmmm

what im trying to say is if the wait is a long time, it just proves you have got to the point where you can receive the help you need, and you have been strong enough to make it.

write everything down, do a symptom diary, this will help you to remember old symptoms you may have forgot.

i have got to the point in this waiting game that this wait agonising as it may have been, and a struggle, means I am capable of getting through whatever they may throw at me…whether it is Ms or not. Whatever I have I will fight head on.

Good luck and I hope you get your appointment through soon, just take one day at a time, if your appointment seems ages away remember you can do this be strong x x

sending hugs x

Thankyou heidi and i agree with everything you said i am also scared the neuro wont take me seriously especially as im 56 but have had symptons for many years can remember in my 30s i suffered with my left foot was told it was a trapped nerve also other things have had steroid injections gp always said was my artheritus until last year when my physio said he was sure its neurological.i have been lucky with my new gp she reffered me because of me being unable to lift my left leg and all the other crazy stuff pins needles tremor electric shocks etc wish you all the best hun with your appointment hope you get some answers will be thinking of you.

Thank you sparky, it is a sense that your body and mind is failing you isn’t it, and sometimes it is hard to explain to yourself what is happening let alone a Dr.

Please don’t be scared Hun, just be honest and try and remember everything that you have experienced, even small things.

having said to you don’t be scared I’m have a fear factor of tomorrow, I think you get to the point that you have had so many tests that have all come back nad, that I’m worried that this is just another nad. You do feel like your going slightly mad at times.

be positive sparky, and I know that isn’t always easy…if you have a wobbly day and need to cry scream or swear…do it!! It’s surprising what a release it is x x

here if you ever need someone to talk to.

remember we’re made of strong stuff, even though our body tells us differently x x

kind regards Heidi x