FND with muscle wasting: hi, I was... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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FND with muscle wasting


hi, I was diagnosed with FND about 3 months ago. It all started with head pressure and fullness leading to earache and lightheaded ness. After a week the aches turned to pain and neck shoulder tension to and within a day my legs went weak in and off. I went in and out of hospital with different gaits/arm weakness/pain and pins and needles. I was then diagnosed with FND after MRI and CT scan showed nothing. Since then my walk has been fine and only one occasion I felt heavy and knee buckled for a few days due to a busy week. I started having spasms and my should muscle has raised on one side slightly. I know have muscle wasting in foot, forearm and hand but my neurologist won’t come back to me. Any help I feel like I’m losing my mind

12 Replies

I have ringing in my ears 24/7 a day it,s a pain in the bum but I,ve got it in both ears. I,ve got a presurse promblers in my left sore it,s sore every forgot. I,ve got the same proumblers of you ? but I,m on the waiting list for the third time because of my non-epileptic seizures what I take every day plus I,ve got a head at the back of my head ,neck and my both shoulders ? That,s is a pain only it,s own plus in the lower of my back I,ve got a disc promblers that can parslery my whole body and we are talking not a 1-10 it,s 15 and my medicne not working for me? So I know what you are going threw? I,m second stuffer in my town of Greenock in the west coast of scotland.

You've got to exercise. My neurologist said use it or lose it and he was right. I had total body muscle wastage but I'm training again now and getting and feeling stronger 2 and a half years on. I'm a personal trainer now as well. Good luck. Dave

Sjbuck in reply to DMA1664

Hi Dave, that’s wonderful to hear but if you don’t mind me asking what we’re you diagnosed with? How did it all come about? What exercises would you suggest for hand and arm weakness? Many thanks

DMA1664 in reply to Sjbuck

Hi. Was diagnosed with fnd , ptsd, anxiety and depression. Try squeezing a ball and light weights for bicep curls etc

Sjbuck in reply to DMA1664

Did they say it can happen with FND? Did you have tests to check nerves and muscles? Thank you I will try this today.

Hi, I have an FND diagnosis but my neurologist has kept sending me for various tests which I have really appreciated. My hands are particularly sore with weak wrists, and I have muscle wastage at the bottom of my thumb which worries me a bit because combined with my twitches, fasciculations and myoclonus, I fret that I might get diagnosed with something horrible. I can’t understand the muscle loss because I type with both hands for a living. I’ve had electric studies done on my hands which did show nerve damage but nothing very significant. I really wish I understood what was happening but it seems that for now, the information isn’t out there and so we all get lumped in a box marked miscellaneous. I’m two years down the line with it all and I think I’m starting to be able to find more peace and acceptance within myself, but the journey getting here was horrendous and I feel like I had to fight every step of the way to get even small amounts of understanding from the GP. My experience has definitely been that if they can’t see it in the NHS’ A to Z of illnesses, then they don’t really want to know. But to be fair to them, if the knowledge and research isn’t out there, it must be a lot to understand unless you’ve experienced it yourself. I was the same as you, started with extreme light headedness which then progressed into speech and movement disorders.

Good luck with it all, I hope you manage to get some answers

Sjbuck in reply to Linlechelie

Hi, sounds like you’ve been through it also and for a lot longer than me. What tests have they out you in for? Your neurologist sounds amazing! The weakness comes and goes with mine but the wasting is new in the last 2 months and seems to be progressing quick which I don’t like.

Hope they get to the bottom of your soon x

Linlechelie in reply to Sjbuck

When I first started with it all, I couldn’t get my GP to understand what I meant, and he had me on and off a really serious combo of medication including stuff for Parkinson’s that made me hallucinate. So in desperation, I took myself to the Walton centre in Liverpool and they took me very seriously and made me an inpatient. I actually ended up on the ward for ten days. They gave me a full body CT scan to look for any masses, then a brain MRI and spinal tap. The brain MRI shows lots of white lesions which they did think might be MS but they now say that they aren’t in the right formation to qualify. I also had an EEG on my brain, and every blood test under the sun but nothing was particularly conclusive. Mostly recently I had nerve conduction tests...that might be a good one for you to request. Same as you, my weakness and spasms are intermittent, I’ve spent months looking for patterns but nothing really jumps out. Thankfully, I wouldn’t say anything is getting particularly worse other than the muscle loss in my thumb. The worst bits for me have been not knowing, never getting any answers, and wondering whether people including the doctors think I’m exaggerating. With no diagnosis, there’s no easy way of explaining to family or colleagues what is going on, and I do think it’s made a huge dent in my confidence as much as anything else, but I’m working on picking that back up again. It does help to know that we aren’t the only ones, others are quite clearly experiencing something similar. Have you had many tests yourself? X

Sjbuck in reply to Linlechelie

Sounds like the Walton centre has been perfect and doing what they can. I ended up going private which wasn’t taking lightly as it costs so much and the neurologist I seen basically said what do you want me to do you’ve had all the tests, but explained I haven’t do he has put me in for nerve tests which is soon so I’m hoping this sheds light and if not try a new route. Spinal have went back to my neuro also and GP as to why these tests have not been done sooner. I no what you mean about pattern as you keep journal and nothing adds up as each day is different. I’m the same it’s more the unknown and new symptoms that arise and some disappear but you never no if your coming or going.

I’ve had lots of bloods, even Cooper test as well as head CT and MRI of brain and spinal and nothing major. Has it been quick the muscle loss in your thumb?

First find a new neurlogist. I see mine every 3 mon. What meds has your Dr. given you. I take colopin and cogenten when I have an episode . Do not give up we have become our own advicate. there other types of treatments out there. Check with NORD for other kinds of help. I hope this helps a little let me know, I'm Judith

Sjbuck in reply to aumond

What do they help with? I’m on lamotragine and propanol and stuff for post nasal drip I’ve developed

Not due to see him till another 3/4 months

Waiting for nerve tests and EMG through nhs as paid private but only did one leg and came back ok so not sure what to do.

aumond in reply to Sjbuck

FND is relativly new. At first Doctors thought fnd was related to some serious things from childhood such as abuse of some sort. My Doctor gave me new info that this is no longer the case. don't be surprised if nonthing shows up. There is a disconect between your brain and your neurological system. There is a Dr.Lafavor in St.Louis-Kentucky. She is the expert in this field. Look this place up to see if they can help you. Keep your chin up keep a good sense of humor helps a lot. let me know how things go.

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