What changes when Diagnosed?

[seamuspg]

I’m thankful to live in an area where there is a clinic specifically designed for FND. MGH Boston. I’m curious what happens when you’re diagnosed, that would not happen if you weren’t? When they talk about retraining the brain what does it look like? I assume they’ll look at medications and try to help with your specific problems even if not the root cause?

I only ask because they have ruled everything else out and when I came across FND, It hit all the buttons. But I’m curious if I’m doing myself a disservice I’m not going in as soon as possible to get a diagnosis. (they’ve ruled out cervical myelopathy multiple sclerosis Parkinson’s B12 deficiency Lyme disease etc.)

I’m already at the gym every day keeping myself as strong as I can. My issues are burning feet burning hands upper body tremor in loss of fine motor skills. I have also had every other neurological problem you could think of come and go. Hypnagogic hallucinations, muscle twitches all over my body, tinnitus, jerks at night, etc…

Do people feel they are managing better because they have a diagnosis?

[seamuspg]

…One more symptom that I’m curious about. When I wake up in the morning and first stretch, my body continues to shake for about 15 to 20 seconds after I’m done . So weird…

[MONIREN]

Retraining the brain by making small changes in the way you do things. I have not had this therapy, we don't have access to it and my husband unwell. But I did get that sort of training at pain management clinic for chronic back pain , made such a difference. Like they made me do treadmill in front of a mirror, I had no idea I was throwing my leg out to the side, but that was a different town, different state. I'm regional Australia. It would be definitely worth it. Take care. Moni

[cocoferraro]

Hi sweetie,Firstly i am sorry to hear that you are having it very rough.

After I was diagnosed with FND they arranged for me to go to rehabilitation, I THOUGHT I HAVE NOT GOT A CLUE WHAT THIS IS, AND HOW IT CANHELP!!!!

Basically it is a number of one 2 one sessions where they try to get to the crux of your problem, eg, what has caused it, 50% of people can put their finger on the trigger, and that is what they work on, is kind of trying to reverse the parts of the brain that are not working properly.

In my case, yes I could put my finger on such problems, and understood and liked the rehab sessions, but not sure if it made any difference to me. 3 years later, I can say it probably helped a little, but am greatful of all the help that the NHS has given me.

I also experience many of your symptoms. They canalso get you in a good place with meds and rehab etc, that you feel happier and understand what is happening to your body and brain. I thik you are doing brillently with the gym and you sound like you "get it" and understand what is happening to you.

I think peope do manage better if they have a diagnosis, cos its like you can put your finger on it, and put a name to it, and deal with it better, also your family and friends too.... I could go on and on, but am trying to cook dinner and all the fire smoke alarms have just gon off!!!OMG-

thankfully have hubbie to help!,

Would like to hear more from you, but keep your chin up,

much luvX

[Brokendeer]

Hi having had Motor FND for 13 yrs I can tell you that not a lot changed after diagnosis with me. Yes, I went to the NHS Rehab offered and did all the Therapies; tried the only medications offered - Antidepressants for a brief while.

Did the Therapies work? Well, sort of, you do get a better understanding of the condition, how there are many many people with totally different symptoms to you, though strangely we all have the same diagnosis?

I found the key to my version Motor FND was to find the triggers, pace myself daily using self-management of activities and not to get hung up on the `normal' activities . By which I mean how they should be done, in what order or in normal expected timescales. Setting goals you can never achieve is soul destroying - always keep it attainable for you that day or moment.

Adapting your lifestyle is sensible, not shameful, slowing the pace allows the brain to process all those unnecessary overload extra FND driven signals rather than confusing the nervous system network more into a system `fail safe' scenario. Try thinking of tasks in a 3 way split of Physical, Mental or Emotional situations and put more focus on one of those areas at a time if possible per task- it does help reduce the overloading and improve coordination.

Note: I found that my brain draws on the help of the opposite circuit `not being used' to assist the circuit being used at times i.e when drawing with my right hand, I hold a pen top in my left hand and I can control my right hand movement & coordination much better or by overexaggerating one legs walking movement it encourages the other dragging leg to try and copy that action etc. The brain is clearly more complex than science can tell us to date!

Family and friends do not understand my Motor FND even after all this time and frankly it is not important, because I have a system of just carefully asking for their help with a specific task and they feel good for helping me and I get things done!

As for the Medical Profession, that turned out to be a much harder and frustrating road after getting my FND Diagnosis. This is because most of the FND Therapies/studies tell you to retrain your mindset to re-learn the correct way of doing things as `normal'. The basis of which is that the Neurons left active (at any age) with the most ability to change are those in the learning centres of the brain. However, an even bigger part is the Therapists insistence of you not focussing on anything that is not functioning `Normally' , to ignore the wrong signals. So you are basically automatically seen to have something `all in your mind' and over focussing on your health if you go to the Primary Care Doctor - for anything not physically proven by them! Be aware - if you have life affecting medical issues in your opinion not related to FND then you must fight your corner to be heard!

That said FND is a real Neurological Condition and you might find this website generally helpful? neurosymptoms.org/en_US/

Look for the calm in the Storm!

[MONIREN in reply to Brokendeer]

Wow! You have aided me to understand it better, lately it's been getting me down, the curve balls FND throws you. Just taking a step back and doing things differently will help. Thank you. I'm fortunate, my gp still sees me, not just the FND me. Take care. Moni

[LouBL0u]

Hi I got diagnosed with FND following a blow to my head. I used to teach and applied that acquisition of early skills to my own learning - I think the brain is plastic and can re build pathways so one example is my speech - couldn’t even whistle! But swore like a trooper! Apparently it’s easier to swear and sing than speak so I revisited nursery rhymes.. only intonation at first to some sounds… I found throwing and catching a tennis ball at a wall seemed to help free up my speech… in re-hab a physio explained how in FND it helps to distract the brain, so when my legs stop, I should stop trying to walk, swing my hips and walk without thinking.. clicking my body back into an automatic response- apparently my over focus on trying to walk was re enforcing an exaggerated process of walking as my brain consciously tried to work out the walking process. Anything that helps you and keeps you strong is great, good luck 🤞

[AjaStar]

In the beginning that’s what I heard that you have to retrain the brain. So okay I went to physio and some days I could do all the exercises and some days I couldn’t do it, but then all of a sudden I could. My physical therapist kept saying but you were able to do this yesterday. She had no idea what to do with me. So I was able to ”learn” to walk straight, essentially I did “retrain my brain”. So if it is “trained” why did my walk change again? So I think this concept of “retrain the brain” is wrong because I did teach it, it didn’t “forget” . The brain just randomly gets overwhelmed with all the stimulations and messes up the signals, but then can return to normal unexpectedly. Very unpredictable. I have learned to just pace myself and anticipate ur symptoms