5 years on and no further forward

[Alison2010]

Hi, my symptoms started summer of 2010. I had a constant tremor in my right hand which quickly escalated to whole body jerks and spasms within a few months. I had suffered with a constant headache for a number of years, and had regular migraines. My GP referred me to a neurologist who I saw for a couple of years, and I had many tests, following a meeting with a number of neurologists, the consensus of opinion was that I had functional movement disorder, I was told I would be better within a year.

I was directed to a website and was referred to a psychologist. I saw my psychologist for 2 years until NHS funding for my treatment meant that it had to stop July this year, I felt no further forward.

I have various symptoms including problems with memory and concentration, full body jerks, spasms, intolerance to certain noise frequencies which can induce pseudo fits, difficulty walking, speech problems, chronic daily headache, migraines, problems with tolerating noise, balance problems, overwhelming fatigue resulting in me falling asleep during the day, irregular sleep pattern. At times I feel as if I have a charge of electricity running through my body, usually culminating in massive, frequent jerks which tend to lead on to a fit. Within the past few months I have developed paralysis following periods of jerking, this is new and a worry to me.

My GP and neurologist advised me to hand in my driving licence almost immediately, so I have been unable to drive for 5 years. I had to give up work last year, having worked for the same employer for 30 years as my symptoms were very severe for a number of months resulting in a warning for my sickness, the stress of that situation, and my inability to see any improvement in my condition, prompted me to apply for and accept a redundancy package.

I can go for a week or two and my symptoms seem quite mild, but I can go for weeks with quite severe problems. At the moment I am experiencing severe symptoms with very little respite but can find no explanation for this. I have tried to work out my triggers and believe I am worse during warm weather, also at certain times of the month. Noise is a huge problem for me, and severely restricts my freedom. I also expect 'payback' if I have been out socialising, or even after shopping trips.

I realise that I have provided an awful lot of information about myself and I hope this is acceptable. I believe that I can no longer 'go it alone' and need support, hence the teason for joining your group. I do take a number of medications to help with pain, muscle relaxants, vitamin D deficiency. I was also diagnosed with sleep apnoea last December and use a CPAP machine. I have also recently had an arthroscopy to tidy up a torn cartilage, which I believe was caused during a particularly lengthy 'pseudo fit' whilst still at work last year, I was wedged under my desk and my left leg was twisted underneath me, I realised that I was unable to move my leg as I regained awareness of my situation. Paramedics had been called due to the length of the episode however I was able to persuade them not to take me to hospital as I knew that I would be discharged without any intervention and didn't want to waste anyone else's time.

I would really appreciate any advice, particularly on my recent paralysis. I don't bother my GP but wondered whether I should be keeping her informed of developments, or even seeking her advice about the paralysis, and my present 'out of control' state?

So sorry to have written so much but I feel that I've finally got it off my chest and you all know what I'm talking about.

Thanks so much xxx

[tmdk]

Hi Alison, its a good idea to keep note of developments/new symptoms and just inform gp. If nothing else, should you need help in the future with benefits ect. I've found out that anup to date journal is important otherwise they think your in a stationary situation. I have paralysis on my right hand side and tingling feeling down right handside. Starting to get kramps, spasms in both feet, thigh and worst of all diaphram. But I've also found that if I worry to much or get to anxious about new symptoms I get worse, also stress situations. So I try and accept my bodys mulfuntion each day and say well thats how it is today and make the best of it. Up until last year I had my own business providing care in the community but have also had to call it a day. So I know how it feels to be firced to stop where wed much rather just be abe to continue as normal. Hang in there!

[Alison2010 in reply to tmdk]

Thanks for that. Have been keeping a journal when I'm bad but think I might jot a few things down on a daily basis. Hopefully I may be able to identify more triggers. I agree that anxiety and worries do have a negative effect on my symptoms but that's not the case at the moment as everything-apart from my health-is going really well. I am still learning to accept my new way of life, rather than hanker after the life I used to have, although it is difficult to always do this. x

[Alison2010 in reply to tmdk]

Thanks so much for your message. I am fortunate that although various parts of my body go into spasm, including my diaphragm, which is extremely painful, I am not in permanent spasm. The paralysis is new but at the moment does not last long-possibly up to 15 mins but was very frightening when it first happened. Is your permanent paralysis caused by FND. I can't imagine having permanent paralysis, I do get tingling on a regular basis in my arm and hands. I must admit I do forget about a lot of things, and any new symptoms I always put down to FND.

I do try to remain positive and am thankful for the life I do have, I just have to accept it Is different to the life I used to lead. Not only have I finished work, but we have downsized our home in the hope that will also improve our quality of life.

Onwards and upwards.

Ali x

[giltnane]

hi so sorry you have a lot to contend with. firstly ask to join the closed fnd group via face book that will be very useful and supportive I have.

yes you should inform your doctor of new symptoms, who diagnosed you? you can ask to be referred to the neurological hospital queens square or Dr. Edwards is in tootling hospital king Georges we have a right to be referred to another hospital or consultant. these hospital deal in fnd as there is a in patients and out patient programme which is supposed to help. I'm currently awaiting to accessed if I will be except on a programme. the condition is very sole destroying and very lonely as fnd is very difficult for people to understand or appreciate that mood swings I feel is defiantly part of the condition. have you a good networks to support you?

I was diagnosed July 15 so I'm still trying to get a better understanding. I have seizures where my body jerks arm first , neck rotas mouth drops I can't communicate but hear surrounding these have lasted 30 40 minutes, become more violent moving whole body and short times but for frequently. I have poor balance, and mobility since an operation to release a nerve at the elbow both my hand are in a locked positions and I have the use of only my thumb and forefingers. I also suffered from server headaches which at times lay in the back ground but at it's worst feel if my head is being squeezed like a melon. I lost my speech February which is part of fnd , socially I feel very isolated as I can't verbally communicate . friends and some family lip read but last fit my mouth locked and won't open for a few hours so was very distressing. I am feed by tube 20 hours day as I cannot take enough food normally to sunstone as I have problem with the muscles from the throat to the bowel. I am constipated and have to take medication due to lack of control, weeing. all my body aches with a deep ache , pain in stomach , chest, back groin, numbness and tingerling and a different sensation on my left side , have to walk with a stick most times use wheelchair or go to shop's in my scooter. every body appears to have a different range of difficult although some are the same. try and read up on fnd and seek support from gp where possible I know that's can be a difficult as some gp don't believe or understand the condition. take care Jill

[Alison2010]

Hi Jill, thanks for your message. I was seeing a neurologist at James Cook University Hospital, Middlesbrough for some time. For a number of different reasons due to various circumstances, I saw 4 neurologists in total. The last neurologist was a trainee (sorry if they have another name but I can't recall it at the moment), I was referred as a matter of urgency by an A&E consultant following a particularly long and painful spasm which started at work and unfortunately ended up with paramedics being called. During my time in A&E I was taken to Resus, ive only recently found out that this was because my heart rate soars dangerously high during spasms, and the consultant gently massaged and manipulated until the spasm stopped. Anyway, sorry I went off on a tangent, the trainee neurologist mentioned a 'Grand Round' where all neurologists are present and they ask you questions and look through your file, you,then leave the room while they deliberate, and the trainee neurologists then called me into a private room and advised me that the consensus of opinion was that I had functional movement disorder ( which I understand is also known as functional neurological disorder). He was really pleased with this diagnosis as it meant there was nothing wrong with my brain and advised me I should be better in a yeat. I did get a further appointment to see my regular neurologist who hadn't been present during the grand round and he was less encouraging about the speed of my recovery. I was discharged from neurology and referred to,psychology. I initially felt like a fraud, like I had made the whole thing up and was in fact making all these horrible things happen to myself. Not only that but at some point in my past I had suffered a psychological event so traumatic that my brain would not let me remember it and only now was it manifesting Itself in this way. I have spent two years talking to a psychologist-who was lovely- but as far as I can tell my main issue is that i take the weight of the world on my shoulders, I do not like to get angry, I do not like to let others know how unwell I feel and would rather hide everything from those I love rather than worry them. That's it in a nutshell. Hence I feel no further forward. So sorry for unburdening myself like this.

I have an excellent support network but again I worry about them worrying about me!

I have the the seizures you describe. My mobility problems come and go, depending on the severity and number of jerks and spasms I experience, my speech goes on occasions too as well as during seizures. I have a stick and walking frame on standby.

I can't imagine what you must be going through, my condition is mild in comparison. You say that losing your speech is part of FND, is this am inevitable part or do,people get different symptoms? I'm worried that I've only recently started with paralysis episodes, is this just the start, is there worse to come?

My GP is lovely, and she actively encouraged me to stop work, but I get the impression she thought that work was the catalyst and that I would improve once I left, which I haven't. I've not really sat down and discussed anything in detail with my GP regarding my FND, I have had other issues so FND took a back seat.

It has got to the stage where I don't really know what to do next and that is why I asked to join your group. I have also joined FB page too.

Please take care, I feel like a right moaning Minnie when I see how badly you are affected. Thanks for all your advice Jill

Love Ali x

[DW31]

Hi Alison,

I can really sympathise with what you are going through as my situation is similar, i get your point about being out socialising and suffering afterwards, it seems to fatigue the brain, maybe concentration the concentration involved. My symptoms are always worse when i am tired. Are you overseas or in uk?

[Alison2010 in reply to DW31]

Hi DW31. Thanks for your message. I'm in UK. It's nice to talk to someone who understands what I'm talking about although it's a shame you're going through it too! In the beginning, i was so frightened, it was as if my body had been taken over and I was no longer in control, just a spectator. FND is really weird with so many different symptoms. I'm concerned at getting worse. I thought I knew what I was up against but it seems to be evolving with the latest being temporary paralysis following jerks and spasms.

Payback is rubbish but sometimes you just have to do what you want to do-be normal, have fun etc. I just make sure I plan payback in my diary!