Merrygoround

[Renwick1]

Was hospitalised seen a neuripsychcologist who trained under dr john stone 10 minute bedtime visit at 10.30pm never saw her again 5 weeks in a wheelchair deserves better than that then ping ponged between physicaitrist physicologist cpn and go it's just a merry go round

[Ailsaw]

Hi nice to meet you , I was diagnosed by dr stone too and 16 months later any improvement has been thanks to me and my family . They need to stop waffling and spend time with their patients and see the full picture of how this condition wrecks your life and your inner self !

[Renwick1 in reply to Ailsaw]

Hi ailsa

[Renwick1]

Hi ailsaw thanks for your reply I've been walking this road for some time now thanks for your reply if I can help in any way with your problems or mine I will be happy to talk it is nice to be in contact with somebody who understands what we are all going through

[Leesaloo]

Hi, I too spent a year and a half ping pong between psychiatrists and private nuerologists, the nuerologists we had to pay private as my then dr would not send me, he was convinced I had depression and anxiety. My FND started with sciatica and was left in agony for too long, ended up with spasms moving up my back, shoulder, neck and into my brain. The nuerologist we paid to see private was also working at NHS as was disgusted how I had been left. He gave me a greater occipital nerve block into my brain which helped me stop dropping to the floor in agony in my head but the pain and spasms dropped back down to my neck and left me like a noddy dog. I finally got diagnosed last year by professor Edwards and am now waiting to go into an inpatient program in London. I'm one of the very lucky ones and have been accepted for this program. Others are still waiting for help, diagnosis. I'm still unable to walk, my speech is dreadful, my sleep is non existent but I'm exhausted all the time. At home isolated and lonely for nearly 3 years now. It's a truly awful illness because no one can see how much pain we are in and think we are exaggerating or doing to ourselves. Why anyone would try to be a contortionist is beyond me. Their is no sympathy out there if no one can see your ill. At least on this website you know your not alone anymore.

[Mfran]

Hi Renwick,

I know this condtion is very difficult.

The medical professionals often leave us with so many questions and the fealing dismissed. My experience in the USA the treatment is poor and very outdated . This is a good place to vent your concerns and frustrations. Be pashant with response to your postings

For me it has been a great help to see once in a wile someone is posting somthing I relate to and I do not feal quite so alone. Hang in take each day as it comes. Take care