Anyone else experience these symptoms please

[Charlie20244]

Hi, so I developed Internal tremors last year in my chest right side and tummy into legs and feet buzzing and shaking fluttering sensations

But then after Christmas I developed this strange movement in wrist legs arms neck back, like a stuttering stop start cogwheel ridgity ( but not true cogwheel) sort of movement tremor.

All tests clear, neurologist didnt seem bothered and said live life and try best to forget these issues

but my family doctor has said this could be funcational movement disorder and they mimic parkinsons or MS etc..

I now have an appointment with another neurologist in April who deals with funcational neurological disorders to see if my family doctor is right

Anyone else got this at all? Thank you all for reading ahead of your own struggles

[Panther5000]

Your neurologist that said to live life and ignore the symptom; that is the worst advise he could of given. I think ignoring any symptom is a way to be disabled in the future. There isn't much in the way of treatments but a Neuro PT could possibly help improve things. I don't have the symptom you described hopefully there is someone on here that does and can be more helpful.

[tabey]

yep all that you spoken about I have suffered I’ve had ms and Parkinson spoken out but once neuros see Fnd they laugh you out the door

[Lady4 in reply to tabey]

I think they should concentrate on what it is and just not saying what it isn't and you'll be fine.

[Bee-bop]

Hi there,

Do you mean your arm, wrists, legs going in a circular motion like a cogwheel? My daughter gets this she has diagnosed FND. Her neck is more it jolts sometimes quite violently so not quite the same movement.

[Lady4]

Unbelievable some of these Neurologists who make such flippant dismisals should learn what it is like to live with FND symptoms themselves. They should have referred you for rehabilitation/therapy.

Its good that your GP is on your side, hope second referral goes better, hopefully he will refer to PT too.

[Aberheart]

I had same reaction from my first neurologist too. I then complained and was able to be reassessed by a 2nd neurologist who diagnosed FND. My 2nd neurologist was very understanding and supportive of FND and understands the importance of addressing the symptoms as soon as they show themselves. He took FND very seriously and reassured me it is a ‘real’ condition that can be gradually improved with the right therapy. I have had similar buzzing sensations and buzzing in my feet and legs. Also visible tremors and internal. With the right neurologist and support and therapy , and understanding and acceptance of your condition, I believe you can be on your way to gradual improvement of your symptoms. I have read some heartbreaking stories of severe debilitating symptoms and seizures that would be very difficult to treat at that level, so push to get the therapy and acceptance of your condition now before it progresses.

[Bugsy2167]

Hello, I too have internal tremors/buzzing sensation all the time and I have balance issues when walking as well as other problems with my FND. I cannot find any help with FND as my neurologist sent me on my way with the FND website address on a bit of paper, thankfully, my GP is a bit more supportive, she contacted the neurologist. She was told that they don't deal with it anymore due to budgeting constraints. We may as well be flushed down the toilet, as that is how they make you feel.

[Bugsy2167]

Yes, North Yorkshire.

[Artistic-Jazzy]

Charlie20244, greetings. I started experiencing the tremors all the way back in 2014. It was the oddest thing because it came out of nowhere and covered my entire body. They would come and go a few times (maybe 3) over the course of 8 years.

Then one day, it became a problem again for me in 2022 when I could not get my head/neck to stop the shaking at least 4 - 5 times out of the week. I thought it was coming from the bone structure in my neck (disc), and started seeing an orthopedic. He referred me on to neurology and it became a roller coaster of journey from there with getting assistance.

Fast forward to last year, March exactly, those tremors became the prelude to the non-epileptic seizures. Every once in a while, I can have the tremors without the subsequent "events" - which is usually 3 - 4 back to back.

I am not sure if you are able to determine what may be triggering the tremors, but if you can journal it would be helpful to you and your care provider. Oddly enough, even using my inhaler can trigger a tremor - which is not fun since my asthma is not under control.

Overall, I did find that if someone can distract me, the tremor will go away immediately. I also attempt to meditate when they begin to prevent any additional agitations that may exacerbate the condition.

I hope this helps you a little and provides some encouragement. I track all of my symptoms to make it easier when I have my quarterly appointments with my neurologist.