just worried that I'm wasting everyones time

hi,

I had a mri last year that showed lesions on left frontal lobe and an area of activity around my neck.o bands were found in spinal fluid. told probable ms.

My symptoms have never gone completely. ms hug went after about 10weeks, my hands still feel burnt. arms felt like they were bound tightly. this eased but has now increased to feeling like i’ve hit my funny bones in both arms and legs feel the same too.i now feel like i’m walking on a slope.forget words.forgot what a biscuit was the other day whilst in the biscuit aisle.sounded familiar when my daughter said dad had finished the biscuits i’d made but what the hell is a biscuit.only lasted for a moment.forgot how to tell the time.the code for the visa machine at work which has been the same for the last 13yrs.get lost in new places so easily.

i don’t always make it to the loo in time, maybe once or twice a week, where i havent been desperate until i get to the cubicle and can’t get my trousers down cos it involves uncrossing my legs.

i went to the drs and was told initially to try to walk straight and use a stick.I went back as i felt no improvement and mentioned bladder probs. told to do pelvic floor exercises.she said if i felt there was a change she’d refer me to neuro but i wonder if these changes are enough to warrant a referal because it involves the same areas affected before.

i know ive deteriorated since last year as regards how far i can walk, my concentration, my dodgy bladder and the pain in my arms and legs but at my drs (where it took me 6weeks to just get an appointment) i’m constantly told ms is tricky to dx and she doesn’t know much about ms. i just feel like they can’t be bothered with me and my confidence is at an all time low

Hi,

No you are not wasting peoples time - go make a big fuss and get a referral to the neuro - your GP sounds massively unhelpful, if the same area is worse its still a deterioration!

I’m afraid to say the one thing this has taught me is to make a fuss (but in a rational way, the NHS don’t like fuss )

Hope you get some help soon, but it does sound to me like you need to be re-assessed,

Sara

You really need to insist on a referal to a neurologist. Your symptoms need investigations.

I would try a different GP as this one is not helping you at all.

Your symptoms have changed so you need to be re-assesed.

Don’t let them fob you off - time to be more assertive.

Good luck and hope you get the help you need soon.

Teresa. x

Hi Anon,

Didn’t you see a neurologist when you got the results of your MRI? I’m in a similar position. I’ve had an MRI and I have about ten lesions. I am having another MRI to confirm. I don’t know why? Aren’t ten lesions enough? As Teresa says be assertive. You have every right to see a neurologist. So make it your right. Being left to your own devices is really cruel. I really gave my Doctor a hard time. I told him I had MS. I had some serious symptoms and he got me an emergency appointment.

Good luck. I hope you get the attention you need very soon.

Adrian x

Hi Anon,

You’re not wasting peoples time but as the others have said be assertive, if necessary change your doc’ but do get a referral to see a neuro. There is no need for you to have to suffer without someone to help you, so if needs be change doc’s.

Good luck and push for referral.

Janet

x