functional weakness

[DANNY444]

Hi I was wondering if anyone could help....
My girlfriend was rushed into hospital several months ago with loss of use down her right side,slurred speech, confusion and body jerking. She had a CT and MRI scan which showed clear and the doctors sent her home four days later with the diagnosis of Functional Disorder??

Since then there has been a vast improvement but she still is suffering on a daily basis with all of the above but not so severe and not lasting as long. We have had no or very little after care, she was due to see a neurologist but the refferal was sent back to the doctors as they are swamped with patients and can't take on anymore and we are no stuck for any help to make her better.

Please can anyone help with what we should do next??

[bonjovi333]

Hi I have just come out of the royal infirmary Edinburgh had numb leg then went into arm told it functional weakness and undiagnosed lucanar stroke. I feel like I walk like a drunk!! really weak and my speech goes sometimes,quite scary! been told not to drive for a month then get review does it go away eventually???

[Louisajc]

Hi there

I just wanted to say I have this also very bad like you, I live in fife too, and have 2 girls and struggle daily. Please feel free to PM me if you like a local with the same condition if you like.  :-)

[tobiegirl]

Love your attitude to having this condition. I have been diagonised with FND and hope to keep as positive as I can,

[faybobs]

hey,
I know exactly how you feel, I lost the complete use of my right leg after a car accident in 2010 and i am still struggling now. The doctor dignosed me with functional weakness, which i find hard to believe in as i am made to feel its all in my head. I appear to relapse every 6 or so months, the last time i lost all control of my entire body coupled with a sever panic attack and i could only move my head, that was scary as my boyfriend had to feed me and do practically everything until i regained movement.

I have had a lot of physio to get me thinking about how to move my limbs and regain the strength and i am back to full speed, i still cant run like i used to, but im getting there, its been a long winded recovery and they have said that there is a chance that i could relapse again in the future. such a scary thought living each day knowing i could suddenly collapsed again and have to under go months of physio again to recover.

stay strong and remain positive, i found it helped having a lot of family support around me. You will regain the strength again in time. And i know this will sound crazy, but dont try too hard, the more i thought about trying to move my leg the harder it became. it will return naturally when you least expect it. but give it time. im impatient that was the hardest thing for me, knowing i could be in a wheelchair and on crutches for months! x

[juliuslover]

hi functional weakness or disorder does not mean its all in your head.  It means that the symptoms are being caused by some deep seated pyscological pain.  sometimes it can be child abuse that the patient has buried deep inside and coped for so long then the body makes them stop.
there is neurological symptoms but these do not have an organic cause.  It is relatively common and usually presents as a stroke initially.  My advice is to ask GP for some counselling and a referral to neuro psychiatry.
Hope that helps.

[k_malloch]

hi iv just read all the above comments, i am 26 was diagnosed with function weakness dec 2010. i have to say i dont know what leaflet you all got saying its all in your head, because the ones i got and the website for functional weakness make it clear that its the nerves not working properly.
i have had one hell of a time with my symptoms. i get weakness/numbness down my left side my left side of the face droops. i look like iv had a stroke when it happens. i get spasms that can look like i am having an fit. my speach is slurred i have trouble remembering words. i try to stay positive and i do find it helps. i have ended up in a wheelchair, and am not able to work. i am fighting for this to be looked at by the disability area. as i cant work and can sometimes like today i cant talk to people. i have a symptom i dont know if anyone else has, but i cld be doing something and all of a sudden i get confused and forget what or where i was going to.
i can not go out on my own as my symptoms can come on suddenly. i also forget to eat, because i dont feel hunger a lot of the time. i do have good days, where my weakness and other symptoms are not so bad. i am still seeing a neurologist.
my advice is that yes its hard to understand and its not in your head. it is real! but try to stay positive and look to set little goals. like i was able to help my daughters brush their teeth and do their hair today.
i was also given some good advice from one of the doctors i have seen. think of traffic lights when you are on a good day. green as your feeling good, (enough to do things) amber. when you feeling a little worse. and red for when you are very bad.
try not to let yourself get passed amber, when you feel a little tired have a rest go to bed if needed. even if you are having to do this several times a day, (like me) but it lets you control it a little better. it is described as being like a computer problem. but i can not agree with everyone that thinks its not real. it is very much real.
i have never met anyone in my area (fife) that has this, but i was talking to someone in NZ who has had it the past 4 years she is now down to 2 relapses a month. i wish you all luck, but remember it does have the chance to go away. thats what i keep saying to myself. its been very very hard, but for the past 10 months iv tried my hardest, and i am determined to win the war so to speak. x

[gerryker]

Just a little update having been released from hospital again yesterday after taking 10 seizures in 1 day i have been told that as its not epilectic seizures im ok and have just to deal with it the consultants words not mine i am so angry and frustrated now and dont feel im ever going to get better

[gerryker]

I was taken into hospital just before xmas this year with weakness all down my right side i was in hospital for five day and a neurologist told me i was suffering from functional weakness since i have got out of hospital i have got worse i cant use my right leg and take fits on a daily basis the medication they have gave me has done absoloutley nothing on xmas day i had a seizure in the pub and was taken to st johns hospital and the doctor had an attitude as if i was faking the whole episode im at my wits end im only 32 and i cant go out on my own i cant walk and have to get my dinner cut up for me i cant sleep properley and get pains in my chest witch cripple me i want more answers in the space of three months ive went from a semi pro football player to a cripple ive fell down stairs and hurt myself gave myself black eyes with hitting my face off brick walls i dont know how much more of this i can take

[kris3112]

i got sent into hospital after loosong the feeling in both of my arms and legs and having slurred speech. i was then taken to a specalist in edinburgh who told me very quickly it was funtional weakness, at first i felt pleased but during my time in hospital i lost feeling in legs 3 times and arms twice the pysio told me not to use a wheel chair because i was to think about not thinking about it and to think positivly, after leaving hospital i have eneded up in a wheel chair because i can now only walk for about 5 hours a day, and i have been paralysed in my back legs and arms on 1 occasion but yet i am still told to think positivly i dont know what to do, it is so scary at 23 to think this is getting so bad i may never walk again. I just dont know what to do.

[runnigmouse]

I have just had the same experince as you however i do have positve tests and the Neuroligist is going to cary out nerve conduction tests to dubble chech for MS I allso have degenerative disc syndrome So the pain is not all in my head! Some of what the doc said makes sense  and mathces my well but the leflet was pants I just want to get better I left with more questions than I enterd with but my parents wher just over the moon with this guy, they said well you wont need your wheelchair any more Like i can just make it go away.

[Raven44]

Well, isnt this fun...I waited one year and 6 months to see a Neurologist because I have symptoms of MS and Chronic Fatigue Syndrome and guess what?? Yes, apparently I have Functional Weakness, what a load of shite! I mean, HOW can someone say its that when you are going through so many muscle spasms in your back area that you are unable to breathe without severe pain/spasms yet the answer above from whoever, has obviously got the same leaflet as I had been given where it lists 'supposed' symptoms, well I will tell you this for nothing, IF what I have is functional weakness then heaven help me because my symptoms are NONE of those described in that leaflet and I have asked my GP to send me to see another Neurologist one who actually deals with MS Symptoms becuase the pillock I saw summed my problem up in just 4 MINUTES. Yes, that is HOW long I was in the room with him and I was wheeled in a wheelchair because my balance has gone, yet he said, Oh are you in a wheelchair? I said, no, I am in a rowing boat, I mean, how STUPID are these people? Go for a second opinion if you feel that your diagnosis is wrong because at the end of the day according to this leaflet, we are NOT believed and it is also suggested that we are IMAGINING every symptom. What a load of horse shite.

[Rasin]

I had my first siezure and shut down at ages 16.Years later at aged approx 40, I diagnosed as having epilepsy even though all tests came back negative.I had a major shut down just 18 months ago and all tests once again were negative. Thanks to a Neurologist I was given the answer to how I felt and all the symptoms  had experienced all those years ago and still have..I am aged 58 and now have a name to how I feel.Functional weakness is real but you can live with it.At last I know what I have.

[DANNY444]

Hi. Sorry my boyfriend put on the first post and I've been posting ever since. ;-) Hope you are OK.

[patsy10]

I knew something was wrong.  I'm confused, is it you or your girlfriend as listed in your first post?

[DANNY444]

Thank you for you advice and for really making me think twice about going to see another neurologist. I went to see a fantastic Neurologist yesterday & I have now been diagosed with narcolespy and forwarded on for more tests. Even though this diagnosis is quite scary, my family and I now have answers and can start coping with this ilness. Thank you thank you thank you!! :-)

[patsy10]

Good luck to you both.

[DANNY444]

Hi & Thankyou all for your help and comments!!!! :-)
I have appointment to see another neurologist as I don't believe in the Functional (it's ALL in your head) Disorder. Hopefully this guy will be able to help and not just give me a label which all patients so easily get given when the docs don't have a clue what's wrong.
So I'll let you know how I get on and thanks again for your help!!

[patsy10]

I just don't buy the "functional disorder" thing at all.  In my opinion, it's a nice way of saying "it's all in your head".  They usually call it somatiform disorder.  Typical response when the tests are normal.  I would make another appt. with another neurologist.  Something is wrong!  She needs a full work-up for things like MS which includes more than just an MRI of the brain.

[suwal]

I have just been diagnosed with Functional Weakness.  I suffer from left sided weakness,loss of speech and numbness.  Functional weakness is not caused by damage or disease of the nervous system, but symptoms are caused by a dysfunction of the nervous system as part of one illness.  Functional weakness is a complex phenomenon.  It arises for different reasons in different people.  This is a list of symptoms that can be experienced:  Numbness or tingling, fatigue, arm or leg pain,back or neck pain,headache,poor concentration,sleep disturbance, word finding difficulty, slurred speech, blurred vision, a floaty distant feeling, episodes that look like epilepsy but are not, frustration, low mood, anger, lack of enjoyment, worry, panic  A number of different situations in which functional weakness arises could be after an injury/with pain, an illness with a lot of fatigue or bed rest, waking up from anaesthetic.  I was diagnosed by a neurologist and I have taken the above information from a leaflet that I was given by the neurologist.   A good way of thinking about the symptoms is that you didnt bring it on but you can help yurself to get better.  If you were a computer, its a bit like having a software problem rather that a hardware problem.  If you would like a copy of the leaflet I can send it to you as it covers the diagnosis in more detail.

[rebecca1176]

My suggestion is find a good naturopath :)  They are not cuckoo or weird!
I was fortunate enough to find one that could see me the day I called her & we correspond DAILY!

I have been having problems for 6 months now with no help from drs (neurologists, psychiatrists, etc)
Naturopath's see things sooo different and can find cheaper alternative treatments.

My neurological problems are now under control with the change of my diet!

Good luck