Hi, im new here, iv’e posted earlier but i think it will come up on someone else’s link, im still learning how to do this.
My name’s Michelle and im a wheelchair user iv’e just received an assistance dog from Canine partners he is a golden retriever called Frazer he’s absolutely gorgeous and is making such a difference to me. we’ve only been qualified for 4 weeks and for the first time iv’e got some independence again. Iv’e been ill with what i think is ms for 4 years but so far iv’e been given a diagnosis of Functual neurological disorder, which they say is your body converting the stress, im not sure that i believe them, there is so little support out there for people diagnosed with FND and at times iv’e been made to feel as if it was my fault and was recently told by my Gp that if i was more positive i would get better which when your trying your hardest to come to terms with your disability makes you feel dreadful,. Iv’e had mri’s but so far nothing has shown up. i have been in wheelchair since May 2013 when i collapsed and my legs went to jelly i couldn’t stand or even hold a fork, i was so scared, i am so much better now but have been left with double vision , terrible fatigue, poor balance ( i fall a lot ] and have a tremor and although i have some limited mobility around the house I need my power wheelchair to get about outside. up until 4 years ago i was very active. Its been a real support reading all of your experiences over the last few months thank you so much.
hi michelle
it’s terrible to hear of people like yourself, getting fobbed off with a convenient label.
i want to offer advice but please forgive me if that isn’t what you want.
any group run for people with any neurological condition will be welcoming and you will be among people who understand what a wonky central nervous system can do.
find your nearest ms therapy centre, usually one in most cities.
i attend the one in trafford, manchester. it’s 15 miles away.
there you can access all sorts of therapies including HBOT (hyper barric oxygen therapy).
meet lots of people of all ages, drink coffee and eat cakes!
they have classes in t’ai chi, yoga and pilates which are run by people who know ms.
they have a neurological physiotherapist which costs £10 a session - subsidised.
try mindfulness meditation - i attended a course at the ms therapy centre but your gp may be able to refer you to a course.
otherwise you can download stuff on t’internet. it helps with pain management and helps keep you mentally on an even keel.
your doctor should attend a course on bedside manner, how rude to tell you it’s all your fault!
maybe he will see that mindfulness will be good for you.
anyway welcome to the forum
good luck
carole x
Hi Michelle
Do take on board what Carole has said.
Functional Neurological Disorder is a nice catch-all term that really translates as “We know there is something wrong, but we don’t quite know what it is”.
You could have a hundred MRI scans, but if the scanner is not powerful enough it won’t find any real detail.
Scanners are rated in terms of their magnetic power (Called Teslas). Most of the NHS Scanners are 1 or 1.5 Teslas, and you really need 2T or 3T to identify some of the problems.
Yes, your GP needs his wrist slapped (hard), but if he wants you to be more “positive” then you could ask him if he can/will refer you for CBT (Cognitive Behaviour Therapy). CBT can help about 1 person in 10. You may be one of the 10 %, but by asking you will also demonstrate a positive approach.
Tai Chi is good if you can get it - and you can do a lot of it sitting down.
But, keep coming back here - there will always be someone who can help.
Geoff
Hi Carole, thanks so much for your kind message, iv’e just tried to message you back but it disapeared not sure where it went thanks for all your kind words, i live in Cheshire so Manchester is only a train drive away i’m still learning how to do the trains with the dog but id love to go to that centre one day.
Hi Geoff, Thank you so much for replying, my doctor recommended CBT, it took ages to get but iv’e been seeing a lovely lady it hasn’t changed my disability, but is helping me to come to terms with it which has got to be good, i felt a lot of guilt as if it was all my fault and as if people thought i was mentally ill one doctor used the term somatizing i felt so insulted. but at the moment i have decided to forget chasing the diagnosis and to concentrate on coming to terms with my new identity. the one good thing is since iv’e got the dog i feel so much happier, i always felt people saw me as the poor woman in the wheelchair. i hated that and it was a real effort to go in public, having children meant i had to for their sakes but i felt so sad, but now iv’e got Frazer im getting the old me back, we go everywhere together in fact on Tuesday in Costa coffee we had a Que of people waiting to stroke him, I have to say in all the doom and gloom of having this terrible undiagnosed illness Frazer is the best thing that has happend for me.
my wife was initially given a diagnosis of Transverse Myelytis by the neurologist but the consultant confirmed MS about a month later. perhaps your speaking to the “wrong” doctor and they may not be fully aware of the signs for MS
Thanks for your message, I’ve given up on finding any answers for now, i suppose i’m just trying to get on with things as best as i can. I’ve seen different people including neurologists but because my mri scan is not showing anything I’ve been given a diagnosis of Functual neurologic disorder which i’m told is my body converting stress, I don’t actually believe them but it seems that once you have that label your stuck with it and they are more interested in proving that you are stressed and will look no further. So i have decided to stop chasing for answers. perhaps one day I’ll find out.