Postcode lottery?

[Adhoc2]

Hi all, diagnosed 4months ago, there seems to be limited support. Has anyone got the impression it's a postcode lottery for the limited support?

[Hidden]

Hi long did you have symptoms for before being diagnosed, I went 2 an a half years before finally getting an answer the doctors and stroke ward I was on twice didn’t even know what it was, so had no help or answers from any one, doctor finally sent me to a neurologist at Barnett hospital who then got me in with specialists at St George’s hospital in Tooting London under Professor Edwards team some of you may have heard of him if not look him up it may help with answers and I’m now under the hospital for integrated medicine on Great Ormand Stress, maybe try talking to your doctor about going down similar path they’ve helped me a lot and hopefully you can get the same sort of help and guidance 🤗

[Adhoc2 in reply to Hidden]

Hi, I've had symptoms going back over 11 years. As times gone on had more and more symptoms. Been under my local hospital N.Midlands for years, then we referred to The Walton, Liverpool and that's when the diagnosis of FND came. There was an 18 year old lady talking about having FND on ch5 news last night. They commented that little is known about it yet more common than MS. It was professor Mark Edward's standing in front of St George's hospital who was explaining so I presume same chap you're referring to ? Its good you're getting help from great ormand st, there seems to be more resources regarding neurology around London. I think Liverpool is the north's version but on a small scale. If they see it working for yourself and others then it would be good if more of that becomes available around the country. I will look up Mr Edward's and hopefully get some new information, Thank you for replying and I wish you all the best and hope going forward 😊

[Hidden in reply to Adhoc2]

God 11 years bless ya, same as you I’ll get different symptoms and they’re always changing and re-occurring again it’s like being on a merry-go-round, have done a five week CBT program at the hospital in great Ormond Street it didn’t help me (but may help you) it helped some of the other ladies that were on the same program as me but the physio Side helped me as I had/have left-sided body weakness combined with vertigo and they done their best to find different medications to treat my symptoms at the time but my medication has since changed numerous times as it stop taking affect after awhile I was told a little while ago by the hospital there is nothing more they can do for the FND side of it and that I probably got it for life but I am under the same hospital for my chronic insomnia which is another symptom of this illness for me, I think we’ve all been left to just get on with it which doesn’t help any of us and no one understands what we’re going through other than us that have this terrible illness, also try the FND Hope site you may find answers there, in the mean time please take care I wish you all the luck in finding the the help and answers you need, all the best 🤗

[Adhoc2 in reply to Hidden]

Thank you, I really hope you get as much help as is possible. My husband keeps saying there will be more help eventually but eventually doesn't help me today. I've read Mar 25th is FND day, will be interesting to see if is highlighted much. Take care

[Hidden in reply to Adhoc2]

Hi how are you doing, I think it’s a long wait for most people who have been diagnosed with FND to get help and advice but just hang in there it will happen I recently found out about the FND day on the Hope site I think is a sponsored run/walk but that’s all I know, doubt that it will happen with this Coronavirus that’s spreading, does anyone know if we’re all more at risk with our FND symptoms? Please take care too 🤗

[Adhoc2 in reply to Hidden]

Thank you. I would also like to know if we are in risk group for coronavirus. Take care 🤗