1 year later and in the same situation

[heather]

this has just been a roller coaster . this time last year i was seen by a physio who noticed something very abnormal she rang my doctor and got me refferd to a neurologist. i was having symptoms like juddering of my head the right leg the muscles were constantly on so the foot never relaxed my doctors was so concerned about me he gave me steroids i took them .then i saw a neuro he spent all of ten minutes with me then said well we will do mri of the brain .

brain scan was fine so that was the end of that then ive seen other people like the pain clinic and then someone at the mobility centre . i then lost al feeling in the legs in march and was admitted to hospital i was left then i left to go home the next day still feeling very ill not being able to walk . then i just tried to carry on with life but it got harder for me to walk i was left very weak constant fatigue then in the end of june this year bamm i was left bed bound struggled to even get my body up out of bed nothing seemed to connect right the judders came back then my top half of the body was hot whilst the legs were like ice cubes i started loosing control of bowels and bladder and now using a wheelchair . i kept seeing my doc who was totally fed up of me as much as i was fed up of seeing him he told me i had depression/anxiety i was seen by phscologist who said my simptoms were physical and they didnt think i had anxiety or deppresion witch i knew i didnt anyway . then the fatigue got worse and worse i struggled to eat food hold cups then the doc told me i had cfs and also neuropathy . then i went back to my doctors a month later saying look im not happy this is not getting better can u please reffere me back to a neuro i said weather i have to pay private i said i will use my last penny if i have to . he agreed to this but then i got letters to go to acupunchure witch i attended then yesterday i saw another physio who checked me over and again she said no something is not right the right leg shouldnt be like that the foot is bending outwards she says i cant help you . you need a specialist neuro physio to help she said i think you need a nerve conduction tests and some scand of the spine . i explained im seeing a new neuro next tuesday .i seem like its been a year wasted no ansaws and now left in a wheelchair its just crazy .i dont know what to think anymore . xxx

[Christina]

Hi Heather

 

This sounds like an awful time for you. I really hope your neuro takes your symptoms seriously and you get some answers to what's going on and must be incredibly worrying and frustrating for you.

 

Let us know how it goes.

 

Chris x

[heather]

i just hope im not in the same situation for another 2 more years .its just got way too much now .thanks for replying christina xx

[lisalisa]

Hi Heather,

 

It is truly disgusting how youve been treated. I cant believe in this day and age you can end up in a wheelchair and nobody on the NHS seems to be bothered or able to find out why !!

 

Its nearly a year for me now as well Hun... although my symptoms have been nowhere near as bad as yours. But my life has been turned upside down. My family life and marriage have suffered and i have no social life at all cos im always too tired or ill to do anything.

 

I got my appointment for Endocrinology for the 20th october. I just hope to God that the Neuro you see next week can help Heather.

 

Please let us know how you get on.

 

Thinking of you

 

Lisa xx

[heather]

i know lisa its crazy .im so confussed by it all i have the physio telling me theres some damage nervess and the legs shouldnt be like this (well i know that ) and now left paying a

[Hezza]

Heather,

It's understandable that you're angry and frustrated hon. Use that anger to give you the strength to keep pushing forwards towards answers. I'll have everything crossed that you have a productive appointment with the Neuro next week.

 

[Dianni]

Hi Heather

 

So sorry to hear you've still no answers. It's really annoying that you've had to pay to see someone, but hopefully you will betaken seriously and you will finally get some answers and even treatment.

 

I hope you continue to feel strong emotionally and that you keep fighting for answers you so desperately need.

 

Hugs

Di

xxx