last year i was diagnosed with fnd, I lost mobility in both legs & my left side weakness has caused endless obstacles but one of my biggest Was being diagnosed with nead in Feb.
since the sizures took hold ive lost my independence & motherhood my daughter is young, im a single mum & I know im going to master techniques to manage this.
I've found each of yr journeys to be inspiring but like us all I continue to battle accessing support
a referral to the lishman unit went in this wk yet I rarely read much on others experience of their journey....i wish my route forward to be best spent as my daughter needs me as much as,I do her
I know like us all time scales will be long but how best have others gone forward?
ive been diagnosed with fnd almost a yr now the fnd awareness day was great but the referral process is confusing
has anyone been to the lishman 2017/18
the hospital try but they now have me in & out of nursing homes, but how else do others cope with nead independently ..is it in yr views possible
as ill define the odds & i will be mum and live independently and never shy of any additional support
im wishing everyone's progress to be well and in Advance thank you for any replies
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I’m so sorry that you haven’t had support yet from a specialist service. I afriad that my Journey started in 2011 when my son was 6 at the time. I also lost feeling in both legs and one arm and was in and out of hospital until they referred me to a unit in Bristol, called the burden unit.
By the time I got to see them, I had had phiso from the community phiso’s and was struggling through life in a wheelchair at work. I wasn’t having sestures - thank god! But the more tired I got the worse the symptoms.
To cut a long story short I was given multi agent help at the burden. With Neuro phiso helping me the most. I also had a occupational health advise and a therapist to help with the depression and why this had happened side of it.
I finished with the burden in January after having different courses of treatment. From Mindfulness courses to neuro phiso once a week at its peak.
My Husband has been my rock and is now also my carer, I manage to walk short distances like 5 metres with my walking stick but rely on my mobility scooter at work and when we go out. The weakness in my arms is much better than it was with me noticing that again I’d im tired the muscles start to tighten up and my arms play up again. After all this time, I have learned to cope with the condition. As my last thing that I need has been taken away in funding at the hospital. They now only do neuro phiso as an in patient. I have reduced my work hours from full time when it happened and I was a front end supervisor at my Local B and Q. The company have looked after me well and I stepped down as supervisor when it became oblivious that this wasn’t going away quickly. I’m now the Stores HR and after the last 7 years have learnt not to over do things.
The reason they put this down to happening was we lost are first son and he past away after being born prematurely.
I also have my car, which is adapted for me to use a push pull hand control. As the feeling in my legs is much the same - useless!
The only other thing I have tired for the weakness in my legs is swimming. In the pool I have no problems with walking, as the water helps to support me. I still have no feeling in the pool through.
I hope my story helps you a little bit. I know how tough it is at the start of the condition, and I’ve read of people getting the neuro phiso in other countries like Australia and returning to there previous life’s without FND.
Please don’t feel like your failing to be a Mum, my son has sadly gone up knowing of my bad health. But I have learnt what I can do with my son. Cinema, and beach holidays in the uk help us as a family battle this. And in the future I hope I will be free of FND.
I hope my story helps you and please get in touch if I can at least help with having a friend who has been through what is happening at the moment
thank you kindly for replying. Gosh look how far you have come yet what huge obstacles you've faced, the loss of yr son is traumatic it's no wonder you've faced difficulty. I was interested in you having been to the Rosa Burden as I too have been but it was Aug bank holiday & they lacked the input there, & I was only sent on assessment. Like you im.in a wheelchair. Unfortunately the sizures prohibit driving even ive learnt a powered chair. My daughter knows how much I love her ive had an amazing friend who has been the extra mile & back for us, im so pleased my daughter has a lovely place to be yet even though this is all done for long term.gain the heart ache of just being me, her mum.and a friend to others & like u i worked in a Screwfix store now ive lost that & been out of work for a year!
anyhow like u, im.striving for that independence it sounds like yr partner has been so great for u, I love hearing about how good swimming has been for you as id love to use a pool ..apparently u can hire beach wheelchairs, my drive is for my independence in or out a chair but its about helping myself to be able to manage what I feel my mind can't.
thank you for your response I think it will one day become widley more understood as more is learnt
My local swimming pool has a hoist to get into the pool. They have a ramp to get up to the main pool and basically lowers me into the pool. I hated using it first time as everyone looks but after a few times you don’t notice it anymore.
Have you tried your local community Phiso team, they came to each week and I ever went to the pool with them or did walking practise at home, trying to build up the distance you can walk. Having that person there with a walking frame you can sit down when you need to and build on that. I would walk up the footpath by the side of my house and try and get to the park each week. Never got there and still can’t but the idea is that you build on how far you can walk.
I’m sorry to hear about your situation around your friend helping you. Do you have anyone else around you that can help you. My whole family have been great and all I would say I’d my support network is very important to me. Even seeing my GP every month, so she is checking there is nothing they can do with my meds. Every month I still seem to have a different problem, but sometimes it just nice to have a gp who understands.
Contact me whenever you want to, sometimes it just nice to read a message and makes it feel that I have someone at the end of a message who understands
the hoist at yr pool sounds great...i haven't ventured for various reasons biggest not knowing how to be guided, I haven't been able to coordinate movement in my legs since last july/aug...but your goal working sounds inspiring,now im in hospital & not in the community I feel unknowing what I can access. Last June July I couldn't of been more determined to walk now I've lost ability to weight bear at all im not giving up on working on.mobility yet I've come to accept that the chair like for many is not my restrictor here its finding the doors to support my progress,
a v good friend & I both feel that to unlock the key to our own hopes & goals we oftern need to walk along that yellow brick road to realise one day were look back & realise we have come along way after all! It seems not how quick we get to emerald city but its about how much we take on board along the way, lion never realised he was brave & thought courage was given yet discovered it was found not from someone elses actions but his own, owning to the v thought that we never realise how brave we are till we need to be
you loretta sound to of gone along way on yr own journey to emerald city, & discovered goals you never thought u could achieve, yet are displaying to yourself and others everyday....
its like I once said to someone if others did everything for us and dropped us to that front door we would never of known how much self discovery could of been sought by going the journey alone after all how would we of known just how far we could walk if others always took us all the way, for me id of never of experienced traveling by train yet would of had to on return....sometimes we can't take that drop into the sea till we trust we can swim be it alone or aided but also else do we feel we'd ever achieve swimming unless we went to the pool & began to try ....thank u for sharing all u have
im glad you have a good doctor it takes getting the right people on board to feel supported by gp didn't know what to do but always tried my ot got it, so did my community social worker but that's cos they were willing to walk a little bit along the bumpy yellow bricks with me, we may have wheels yet when curbs are not possible to mount onto or the slabs are bumpy & the drop curbs are parked on we always have to find another way around, albeit slow if we get there, our journey is achieved
thank you for sharing as yes do learn alot through others experiences as we discover professionals are learning off us
Hi YellowBrickRd, My fnd journey started over 3 years ago. It took 17 months to be diagnosed and get to professor Edwards, after seeing professor Edwards he referred me for a months inpatient at queens street London for physio, ot and cbt. It took 6 months waiting to go into hospital. The physio helped me the most to walk without dragging or limping on my left leg. I can now walk further but still not far as I’d like before the fatigue hits me. I have to pace myself all the time as my symptoms return whenever I overdo it. I haven’t had a nead/seizure since being in hospital except they noticed I have very brief ones which I hadn’t noticed, like a brief glitch before I can move, I still have these but am now aware of them. I’m still unable to drive as the fatigue is overwhelming after 3 miles and I’m unable to talk and start spasm issues. They told me in hospital that they are unable to cure the condition but give techniques to deal with it. Unfortunately I am very isolated where I live which doesn’t help me either. I am very pleased my massive seizures have stopped as the pain with them was awful and I would be unresponsive for at least an hour plus I found they left me very emotional and depressed. At the hospital they taught me the fatigue has a major influence on my symptoms and to listen to my body and pace myself all the time. I wish you all the best on your journey, there is hope but you constantly have to fight for it and not give up, easier said then done some days. Best wishes 🤗
Pacing yourself seems so wise im hoping to get a full blood count done esp understanding that some deficiencies' effect us alot I wonder if that may help ur fatigue yet it comes on so quick I get v tired some days and my processing slows.
wow what was it like meeting dr Edwards I can only hope for the chance im awaiting the lishman but I realise it could take some time
im sorry to hear you feel so isolated its enough coping with this difficult misunderstood disorder as it is.
thank you for sharing all you have, before I lost use of walking my leg turned in and dragged it was hard to do so well then loose further loss but this time if both but I dont spend days wondering I try to look ahead
Hi, all of my appointments I had awful seizures, I don’t remember much about professor Edwards, my partner said he was really nice though. I think for over a year I only took magnesium and b12 to help my brain. My pain diminished after 2 years and now comes back if I overdo it. The pacing is the hardest as it’s such a fine line between pushing yourself and not overdoing it. I had lots of blood work done in hospital and that came back ok. Also I don’t drink enough water and constantly had low blood pressure in hospital, even now I forget so much, I still have to write things down to remember. When I overdo walking, the limp and foot turning in comes back. The fatigue mentally and physically is a hard constant battle every day. I really appreciated my inpatient stay and learned a lot, ld just hoped to have achieved more since being home. Kindest regards 🤗
aw it sounds like you've learnt more than yr given yrself acknowledment for
like you my blood pressure is always presenting low, I wonder how that impacts my attempts to do things. They oftern advice I drink more yet I get through 3 litres some days.
I have been converted I was once a coffee-holic yet now im a herbal tea fanatic well novest really, my friend helped me to see the benefits with them & ive not turned back since
im.also bladder retentive which presents with challenges esp loss of sensation when I need to go, b12 comes up so much & magnesium supplements it will sure be of interest to me one day.
it sounds like you learnt alot from yr stay ..the tiredness makes alot of sence, the inward foot happened to me the day I lost mobility but similarities i was pushing self too that days
I think diarys are great to focus on as we experience so much That, if nothing else, its a record of intriguing interest ... I also say that they are as id rather focus on that then my poor memory
it is hard, I sure can hear that from you but as my trusted friend says listen to ur body its probably protecting you by inviting you to slow down & alow others to help you.
thank you for replying..i think we all need to remember home will always challenge us as life's paces are faster then the resbite addional support care can offer but don't be down its hard to find help, but were doing it alone aren't we ...sadly it will take a known star or figure to come out they have it before much is done but by you having been to these places your helping them understand this newly presenting disorder that defines medical theory
at least we have a site like this to air our concerns
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