finding help!!!

[cassie1317]

hello everyone

Recently I have been diagnosed with what I believe to be called Funtional dissorder..

Let me tell you what has been happening with me.

About a year ago I have started to get tingling and numbness occassionally in my face and thought that maybe it was stress as it wasnt occuring wasn't every day.

However over the last few months I have been getting more and more numb patches on my face with tingling several times a day and so a few wks back took myself off to the GP. He then sent me straight for an MRI and bloods to see if there was anything going on that we should know about. The MRI and bloods were all normal and i was told to come back to see the neurologist 2 weeks later. Not even a wk later whilst in company of a friend my bottom left side of my face fell down and i lost any thoughts in my head...this lasted only a few minutes. However after i kept losing words and memories...feeling vague and tired and short term memory loss. When i then saw the neurologist he said it was stress...i havent been stressed all over this past year and so was unsure on diagnosis. I went away stil feeling vague and memory problems.

Since seeing him I received a letter he also sent to my GP... Referring me to try this website, and also a site called neurologysymptoms.org which explains my symptoms. that neurologysymptoms.org has been very helpful as i was beginning to think i was going mad as my memory has been horrible and ive usually a memory of an elephant, it has often been joked.

There has also been a few symptoms that i have had in the past few years that docters were unsure of that seem to come under my diagnoses now... including a few yrs bk my right leg went 'dead'.. i couldnt feel it..hosp just said prob muscle spasm in back...twitching in right hand for a few wks, and a couple of years ago i went blind in one eye for 10 minutes.hosp said might have bin migraine related.

The thing now is that i am not quite sure where i go next as i eat healthy and exercise( recently losing 3 stone), and i am a single mother of one 6 year old daughter and although she understands my memory isnt as it should be right now,... i am concerned that any other symptom might develope with her as a witness. luckily she wasnt there when my face fell the first time. i work part time and at the moment have no problems with mobility its just the memory and tiredness thats affecting me ..stil with stingling numbness and sometimes burning sensations to my face

So please could anyone give me advice on what do i do next to help myself or if anyone has similar experiences as i feel like im goin mad .

many thanks in advance.xx

[VivienneWaterworth]

Hi Cassie

While I don't suffer those symptoms, I understand that a lot of people with Functional Disorders (FND) get problems with numbness in random places around their bodies. That would be devastating for me if I had experienced them. I get seizures/muscle spasms but don't lose consciousness.

I don't know where you go from here with respect to getting rid of the numb patches, but getting support from lots of others with the same symptoms will help you to handle this situation a lot better. The FNDHope Facebook group is excellent for that purpose.

The website you mentioned is neurosymptoms.org (slightly different name). Dr Stone, who set it up, is one of the top neurologists in the world in the area of Functional Neurology. There are several YouTube videos of him talking about FND.

The other excellent website is fndhope.org set up by our big patient advocacy group, based in the US but with a branch in the UK. There are some valuable resources there.

All the best for the future.

Vivienne

[PennyC]

I started exactly the same as you having tingling sensations in face, neck and hands. I have suffered with headaches for years and migraine but hadn't really registered how much longer they were lasting. I used to joke how many days I had the same consistent headache and regularly got to 5&6 day headaches. Next my left eye started to have a stutter and wink all the time, that was annoying but still I didn't go to GP. On holiday I was feeling really tired and different but just put it down to not being my usual rushing around self. We innocently took a photo of our selves getting ready for our evening meal & I checked to photo and realised my face had dropped on the left hand side, rushed to a mirror to confirm it was the camera but .....it was me! My husband panicked thinking I had a stroke. I was convinced it was as I had no other symptoms. As we were the other side of the world in a not very developed country I did nothing and my face went back to normal, but I had the photograph.

I went to my GP on return and spoke about my face the tingling,numbness. She said she thought I had MS and sent straight to hospital. 2 days of tests followed and thorough questioning an MRI and lumber puncture. I was discharged confused as hell and none the wiser. They said an appointment would be in post for neurologist. I was so sick with the effects of the lumber puncture ended up in bed for 2 weeks! So sick I will never have one again.

I rang to ask about appointment and they said I should hear in 3 months about appointment, I was livid. No answers for 3 months. My employer paid for me to see someone private the following week. He said classic case of Functional neurological disorder. I was prescribed Amytriptline which for me have made a difference. The headaches are so much more manageable the pins and needles have gone as have the numbness. I can now sleep as didn't realise before how badly I slept. I still have memory gaps and times when I can't think and when I change words and whole sentence around completely. Fatigue was horrendous and my biggest worry so GP sent for bloods and my Vit D came back in single figures and I believe it should be around the 70,s. She prescribed Adcal and it has helped a lot On a good day people would not know there is anything wrong with me. On a bad day it is a different story but I am grateful I know what it is, don't know why or why me but I guess we all feel that. Anyway I have ranted far to long. The people on here are great and answer any questions and fears you may have. One thing I can 100% guarantee you are not alone.

Hopefully one day enough money for research will go in FND and we will all be recognised, as at the moment we are not! Good luck and best wishes

[giltnane]

poor you, I have the tingerling and my face going tight, I have lessen sensations all down my left side , mine started WITH FALLS IN 2008 HAD PHYSIO WHICH HELPED THEN 2010 PAIN IN GROIN HAD SOME TESTS THEN PAIN IN LEG THOUGHT TO BE BURSISTIS HAD 4 STEROID INJECTIONS FIRST ONE WORKED THE REST USELESS I WAS GIVEN MEDICATION FOR PAIN AND I THEN GOT SERVER PAIN IN MY CHEST AND COULD EAT THUS MEANT I LOST WEIGHT , CONSTIPATION,. WAS SENT TO SEE SERVERAL DR CT MRI BLOOD TEST , MANY UPON MANY AWFUL TEST WHICH CAME BACK NOTHING. THEN WAS TOLD MUST BE IN MY HAD AND FLASTE TO SEE PYCHARTRIST , WHICH STATED IT WAS A PHYSICAL CONDITION NOTHUING MENTALLY. I WAS TAKEN IN TO HOSPT FITTED WITH A NG FEED IN 2012. SINCE THEN I HAD TRAPPED NERVE ON MY ELBOW AS MY HAND WAS CLOSING OPERATION DOWN BUT NOW BOTH HAND ARE IN A CLAW POSTION ONLY USE OF THUMB AND FOR FINGER WHICH IS CLASSED AS HAND DYSTONIA I THINK. HAD A BIOSPY ON MY LEG SINCE THEN CAN'T WALKJ PRPERELY MY LEFT LEG GVES WAY HAVE TO DRAG IT AND HOLD ONTO FURNITURE WHEN OUT I HAVE A SCOOTER OR WHEELCHAIR. I STATRED TO TERRIBLE HEADACHES SINCE 2014 AND STARTED SEZUIRIES WHICH IS BEEN CLASSES NON EPEALETIC ATTACKS DISORDER SINCE . 2015 STARTED TO HAVE A CROAKY VOICE WHICH TEST SHOWEN ALL VOICE BOX WORKING AND SINCE FEB 2015 WOKE UP LOST MY VOICE AND STILL NOT RETURNED THIS IS THE WORST FOR ME. IT DOESA SOUND THAT YOU HAVE SIMULAR THINGS TO MYSELF AND OTHERS THAT HAVE BEEN CLASSED AS FND FUNCTIONAL NUROLOGICAL DISORDER. THERE ARE FND CLOSE GROUOP YOU CAN JOIN WHICH I BELONG AND VERY INFORMATIVE AND SUPPORTIVE. ALSO ASK YOUR CONSULTANT OR GP TO BE REFERED TRO BE ACCESSED FOR INPATIENT TREATMENT PROGRAMME. I AM PRESENTLY AWAITINFG TO BE ACCESSET IF I AM SUITABLE FOR IT. I WILL TRY ANY THING AS FND HAS TAKEN AWAY ME AND MY LIFE. READ AND LEAARN AS AMUCH APOSSIBLE . SOME DR FEEL THAT FND IS TRIOGGERED BY EITHER TRAUMA OR IN MY CASES OPERATIONS POSSIBLE I WAS ALSO DIAGNOSES WITH PAN GI DYMOTILLITY 2012 HENSE A FEEDING TUBE WHICH AT LEAST I AM NOW STABLE . SO SORRY THAT YOU ARE POORLY. I HOPE YOU HAVE A GOOD SUPPORT NETWORK. TAKE CARE JILL XX

[cathys20]

Good Morning, I encourage you to read as many of the posts on here as you can. We are not all the same, we don't fit into a tight little box, that is what throws the neurologists off. We have a yet ( truly undiagnosed medical condition). It varies in symptoms and degrees in each one of us. I believe it is a neurologic movement disorder. I believe they are right that our brain is misfiring..With no doubt I believe that. I believe it is genetic or some sort of brain damage, or environmental damage to our brains central nervous system. It will take time, but I also believe they will eventually get this right. I believe there are great strides in Europe on this, not so much in the US. Holding you in prayer. God Bless, Cathy

[cocoferraro]

HI,

IT SOUNDS LIKE YOU HAVE A VERY GOOD GP AND NEUROLOGIST

A LOT OF PEOPLE ARE NOT SO LUCKY

I HAVE MANY SYPTOMS THAT STARTED OVER 4 YEARS AGO

I HAVE AN EXCELLENT GP AND NEUROLOGIST

I WAS REFERRED TO THE SAME WEB SITE AS YOU

THIS EXPLAINED MANY OF MY SYPTOMS

SINCE THEN I HAVE DONE A LOT OF RESEARCH AND FIND THAT THEIR ARE MANY PEOPLE JUST LIKE US WITH VARYING DEGREES OF SYPTOMS

AS YOU WILL PROBABLY NOW, THE NEUROLOGISTS RECOGNISE OUR SYPTOMS AND HAVE GIVEN IT A NAME, BUT ARE STILL DOING EXTENSIVE TESTS TO FIND OUT MORE

SOMETIMES PEOPLE CAN MAKE A COMPLETE RECOVERY

SOMETIMES PEOPLE RECOVER ONLY TO RELAPSE LATER

SOMETIMES PEOPLE DONT RECOVER AT ALL

I THINK YOU ARE A BRILL PERSON FOR BRINGING UP YOUR CHILD ON YOUR OWN, AS I DID.

I HAVE THOUGHT LONG AND HARD ABOUT FUNCTIONAL DISSORDER AND DONE EXTENSIVE RESEARCH, AND YES, I AGREE SOME OF THE SYPTOMS ARE VERY FRIGHTENING, BUT THE BRAIN IS A VERY COMPLEX THING AND IF YOU TRY TO UNDERSTAND WHAT YOU HAVE THEN MAYBE IT WILL HELP YOU ON YOUR ROAD TO RECOVERY.

IT MIGHT HELP IF YOU HAD SOMEONE TO TELL ALL OF YOUR WORRIES TO, I HAVE A VERY GOOD COUNCILLOR, WHO IS AWARE OF WHAT I HAVE AND HELPS ME A GREAT DEAL, ALSO IF YOU GET IN TOUCH WITH YOUR LOCAL MENTAL HEALTH PEOPLE, VIA YOUR GP, THEY CAN BE OF GREAT HELP AND KNOW ABOUT THIS THING THAT WE HAVE, THEY CAN GIVE YOU A LOT OF ADVICE AND HELP YOU NO END, ITS WORTH THINKING ABOUT,

I WISH YOU WELL, LILLYX

[cassie1317]

Thanks Lilly...update...a couple of days ago I had a whole day where I felt vague with a halo type headache...then yesterday on the way to work in the morning I had tightening in my head, my face felt droopy on left side and tingling hand.this was whilst I was on a bus and only lasted about 2 minutes. I got into work and with 10 mins later my right legand right arm both went heavy then numb.I couldnt lift them. Straiggt away I went to GP...not seeing my normal one having to explain wot has been goin on. She agreed it is functional disorder from wot she understands of it and suggest I go bk to casualty to see if I need yet another brain scan. I gorlt down there and after waiting around a diff neurologist said wot I had expected...no need for a head scan tjis soon after the previous. Said I should go bk to GP. So I spoke to GP over the phone who is now referring me to a phycologist. She explained how the theory of something that has happened in my past may cause these symptoms.... I felt upset at this as she sounded like she was implying I was incontrol of wot was happening to me. I said I am willing to try anything to help myself get batter. However I found it hard trying to explain to work today wot is goin on as I can self certicate myself with sickness this wk..and they said do I know how long I wil be off work. With the symptoms im getting often goin as quickly as they come...I told them I wasnt sure. I feel like a fraud as my work wanted to know what the treatment was and wots the next step and telling them im being reffered for psychology makes it sound like im mad. Thats how I feel right now..like even tho neurologist has told me its FND nobody knows how to treat it or tell me what else to do other than talk about it. .. I feel frusstrated and the only stress im feeling is the stress of these episodes.

Lilly im glad you have found help with a councillor....wot r your symptoms if you dont mind me asking.

im in Bournemouth..where are you located as im trying to find support locally.x

[Shar1967 in reply to cassie1317]

Hi,

Currently not in work, was due in yesterday, though since I saw the Neuro on Monday, I have done nothing but cry! After all these years I just can't get my head around MS to FND, you think I would be grateful that I don't have MS! though why don't I? I am told by friends I am strong and a survivor, though now feel a fraud also. Neuro no sending me to see a psychiatrist (neuro), though been down that road before, and told nothing mentally was causing it!! I don't know how to tell work I don't have MS, my son who was brought up with having to carry me when I couldn't walk and more. I probably like yourself and many others just do not know what to do, and where to turn to. I can one hundred percent over the years have tried to be positive and help myself, though when the 'Weird and wonderful things' happen, they just happen, whether, happy, sad, tired, they just happen!

These and the other sites are helpful, that not on my own, but there is only possibly us look at them, and not people around us, who we find had to explain, that we don't know why we are like this. I just want to be 'normal'.

I live in Weston Super Mare, not far, but would also like support close to home.

Take care

Sharon

(sorry for venting)

[FreiNDly]

Hi Cassie

I've only just got round to looking at my post so apologies for the delay in responding.

Your symptoms are not that different to the ones I started with. I can understand the difficulties you are experiencing in obtaining a diagnosis as it took me several years. However, I eventually saw a consultant at King's College Hospital and he diagnosed me with a functional disorder and arranged a treatment programme for me. Whilst I still have symptoms I do understand what is happening to me which makes a huge difference, plus I am able to manage my symptoms better which again makes a difference as I am more aware of my limitations.

I still see my consultant regularly and whilst it will necessitate a trip to London, it may be worth you seeing him. His details are as follows:

Dr Paul Shotbolt

Consultant Neuropsychiatrist

Department of Psychological Medicine

King's College Hospital

Denmark Hill

London SE5 9RS

Tel. [phone]

Email [e-mail]

Without going in to too much detail regarding treatment as everyone is different, Dr Shotbolt arranged for me to be admitted to the Lishman Unit at South London and Maudsley Hospital which has close links with King's. The ward specialises in functional disorders and even though I was sceptical before admission, it was one of the best decisions I have ever made, especially as I met a lot of great people with similar problems and was looked after by a team who knew what they were doing and cared.

The difficulties of obtaining a diagnosis can be distressing as you don't know what is wrong or why you are having the symptoms. However, whilst you will have to be guided by your medical practitioners regarding a diagnosis, as I note it has already been suggested that you may have a functional disorder I would strongly recommend you or your GP contact Dr Shotbolt to ascertain whether he or one of his colleagues is able to see you (he is very pleasant to talk to).

I hope this is helpful and wish you the very best of luck in overcoming this awful condition.

Best wishes,

Francis