Any answers?

[Dazedconfused14]

Has anyone had any recent answers about this? Been suffering for 8 months and maybe this sounds silly and dramatic but the stress of not knowing has made me retreat into quite a deep depression. I don’t know what to ask my doctor to do or which tests to request! My MRI head was normal and EEG slightly abnormal but not clear epilepsy.

[Brokendeer]

Hi you are definitely not alone in wanting concrete answers as to whether you have or do not have FND and what to do about it?

This is probably the most frustrating Neuro condition anyone can ever be diagnosed with and equally there is no set formula for recovery or support either.

Most medical professions who are not FND Specialists have no idea how to treat it, everyone with FND has wildly different symptoms, but often the same diagnose.

FND Specialists rely on advising patients to undergo non-tailored Neuro Therapies for the vast majority of cases, often delivered as Outpatient Clinics or if lucky, Inpatient Mulit- disciplinary Rehab Courses. They just clump a few treatments together which in the past helped some FND Sufferers; mainly Cognitive Behavioural Therapy, Neuro Physiotherapy, Occupational Therapy and/or Psychotherapy.

Your life has changed from your normal?

You now have symptoms which you do not understand can be happening or can really explain to others?

You may have anxiety or depression or both?

You desperately want your life to go back to normal!

- these are all perfectly reasonable and widely experienced problems with FND.

I have had Motor FND now for 14 years and can tell you things can improve, because you learn over time to recognise trigger activities which make symptoms worse and either avoid them or adapt around them - but the elusive `back to normal' rarely ever happens... FND brains physically change and so I had to accept that in the end.

Concentrate on finding a good FND Specialist, getting a true FND diagnose i.e rule out other Neuro conditions, Thyroid conditions, Allergies etc (there is no scan, test or medication out there to confirm/cure FND). And ask yourself what you need to achieve to get your new life back on track- as you are today with your various disabling symptoms.

Do you need to adapt the ways you do things? i.e slow your pace of activities or split up your frequency of tasks to let your brain catch up, reduce your adrenaline and understand the unhelpful extra neuro signals whizzing about confusing things?

Do you need to look for outside help from family and friends to facilitate certain tasks? - always easier to have in mind what your goal is and just ask them to help you with that specific task,

Do you want to try a short course of Anti-Depressants or Dopamine Boosting meds to see if they help clear some of the odd brain signals? - the effectiveness varies for FND patients, sometimes just mixing up the brain chemistry briefly can actually help clarify things.

This website is pretty good covering the basics of FND, what to expect & what to say to others etc

neurosymptoms.org/en_GB/

Though it does not cover all symptoms experienced by FND patients.

And of course the USA version of fndhope.org is great for up to date info, opinions, medical studies and has blogs/support groups etc The UK version is not as comprehensive on the condition, but still there.

Look for the calm in the Storm!

[HenriettaPoultryfoot]

Dazedconfused14,

I am saddened that you are so depressed by your situation. Being clinically down about such a life-altering disorder makes everything even harder. You are not being silly or dramatic!

I get it about the long wait to find answers. For me, it took almost exactly a year. I hear from others that it a shorter time period than many had to wait.

You have TWO big issues at the same time! Very rough and can be overwhelming. In my opinion, a team approach may be a good thing. YOU are valuable and worthy of good medical care.

I hope you have a quality, open-minded Psychiatrist (and a Psychologist) to work along side of you for the depression component.

A Neurologist is much more in tune with the brain and it’s functions than a general internist or primary care physician. If you can find a Neurologist that deals with movement disorders, all the better. The Neurologist/Movement Disorder doctor will know what tests are appropriate.

I don’t know where you live. I only know about my country. The US has some major medical facilities (that are top level) with movement disorders departments that handle folks like us. Not just Parkinson’s. Mayo Clinic in MN, Mass General in MA, John Hopkins in MD are a few that I am aware of. Virtual telemedicine may be available.

Hang in there! Easy to say but hard to do. I break up my days into little sections. I don’t focus on everything at once. It’s too much.

I hope you can feel encouraged that you are not alone. This little group is supportive.

HenriettaPoultryfoot

[GardenPlant]

I am so very sorry to hear what you are going through. My journey lasted 3.5 years before a diagnosis was given. The key is finding a neurologist - a neurologist that has experience with FND . Also some therapy may help as I did see a therapist when I could no longer cope. Just try and hang in there as we all care.

[Myfnd]

Agree with the recommendation to find a neuro that focuses on muscle movement. My first neuro diagnosed me with anxiety ? The second with FND with dissociative seizures. She was a god send and diagnosed me after one appointment and a heap of movement exercises

[Lining]

I had to wait 24yrs before i was told I had FND. I had seen two neurologists in they time. But last year I saw another one who as soon as he saw me having a movement spasm he told me what it was. Now there is no other medication that I can but what I’m taking . Hope you can get a sorted very soon