FND diagnosed recently

[ecoyle223]

Went to the ER about 2 months ago suspecting I had a stroke. MRI and all blood work (a lot of tests) all negative, was sent to a neuro 3 days later and diagnosed FND.

Questions for the community:

- Docs seem supremely confident this is FND but to my knowledge, no EEG or anything related to screening MS have been discussed. My brain MRI is clear but should I also ask for an EEG and/or spinal MRI? Are there other tests I should be advocating for to rule out other symptoms?

- My symptoms have not abated in any way since starting extensive CBT, Phsyical Therapy, a new relationship with a Neurologist and, separately, a neurospychiatrist. These are movement disorder specialists - my PT in fact was trained at Re Act in CA but is about to go on maternity leave. So I feel like I've got a good team, but their confidence in this diagnosis and complete confidence that I will "get better" despite only getting worse in 2 months. I've been documenting on video my symptoms to show to the team.

- I am on medical leave from work for 3 months to "get this sorted" but the longer I go without relief the more I am convinced that my career is over. Somehow luckily I ticked the "supplemental LTD" box on my health insurance so LTD is a possibility. Do lots of people with FND go on disability? I feel like my team is discouraging me from that but I can't even sit still at a computer desk, my movements are that bad. My wife is so concerned at this point and that stress is compounding my own stress.

- Started over 10 years ago with migraines, restless leg, myoclonic jerks, then an eventual trunk wobble that has only gotten acute in the past 2 months.

[eviedotty]

so FND is the only diagnosis they can give you? I have most of your symptoms and my diagnosis is dystonia. Now for me CBT has been a godsend because first I have kept a level of independence and second it is as its called in the support group my new normal. Now when I say my own independence I remember early on using a vileda mop and a bucket of water to wash my car and clean anything above shoulder height as that’s all I could manage, I remember it taking 6 tasks to change my bed because it was do a bit then sit down, I remember getting my adaptive aids such as a cup with a lid to stop me from getting scalded with hot tea from my wobbly tremors and spasms and the list does go on with a thinking pattern of start at the goal post end and work back to the start to work out how to get the job done.

I now after ten plus years have a new neurologist due to the previous one retiring and my life is now hell on earth. Firstly the change of attitude is going from a place of good management to a place were they think they can cure it or fix it in some way with a ton of….oh dear I am quite worried about you!….you’re standard of life is really not good at all etc and meantime I am running with long Covid on top of previous dystonia diagnosis and I won’t lie to you the doctors attitude is now having a very serious detrimental effect on my mental health and my own battle is to try and ignore them and focus on the fact that two years ago I thought I wasn’t coming back from Covid and now not only am I back but I am having to deal with the fact that Covid and pre existing neurological problems are not a good mix.

Now emergency medicine and my own GP doctor is fully on board with the support I need thankfully but the neurologist is of the view to minimise the dystonia diagnosis and look for another diagnosis to bend things to their way of thinking. I have had two face to face appointments with neurology and am presently healing from two significant injuries one to the spinal area and the second to the neck so were Covid rendered me housebound the neurology have gone one step further and have me now bedridden because with spinal injuries I cannot even sit in a chair for very long. There is no accountability and no support from neurology now because I can’t pretend that I am not injured so I am in between a rock and a hard place just now and mentally feel numb that practicing medical staff are allowed to behave in this way with no regard for patients safety but its looking like they are allowed which has put me into the position of having to put personal safety above medical need while the fight goes on to get them to understand what they have done. Take one day at a time and focus on what you can do and this will train your brain into looking at other ways of living and once you have been able to do this allow it to become your new normal as this will take a lot of stress and allow you to focus on daily achievements and will improve your life so much you will be glad you changed your mindset.

[Lady4]

Having a good team is amazing and having a trained Re Act PT even better, as they think outside the box and add a fun element to the exercises.

FND can only be diagnosed by rule in symptoms.

Try not to think about what your future looks like, it just adds stress and no doubt makes your symptoms worse.

Would your health insurance cover a 4 week Re-Active intense course? Its just a thought.

[Van604]

I can only speak from my own experience. I also had stroke-like drop attacks that lasted from a few minutes to several days. They would leave me extremely weakened to the point where I had to use a wheelchair. I moved from that to a walker (which I still use on occasion) but mostly I am now walking unaided, apart from a leg brace and sometimes a cane. I can't walk very far though. The drop attacks occurred over a period of about 5 years, but it's now been 5 years since I had one. I believe that the reason I have improved at all is because I am now much better at managing my energy. I had a 3 hour daily commute on top of a full time job and it was too much. Luckily, I was close to retirement anyway so went on LTD. Several blood tests also showed I was severely deficient in B12 so I now supplement. I was given an EEG in the hospital but it was a full day after I collapsed so don't know how much use that was. The FND guru, Prof Stone in Edinburgh, orders full brain and spine MRIs, but I only got head and neck in my country. I have had persistent back problems for decades and had just had lower back surgery when my FND symptoms began, but no one has joined those dots.

I've spent the last 8 years reading just about everything ever written about FND, as well as attending the FND Society's monthly webinars and their conference. I've come to the conclusion that not even the experts really understand, or can even define, FND. They certainly don't agree on very much about it. Treatment is trial and error, and prognosis is guesswork.

I'm at the point now where I just do what feels right and I make sure not to get too tired. If my symptoms get worse, I pull it back - I've discovered the afternoon nap! I still read articles and papers on FND, and attend the webinars, hoping for a breakthrough, but in the meantime I just try to be kind to my brain.

[Lady4 in reply to Van604]

I am guessing the back surgery was the final trigger for the FND but just because you were diagnosed with that doesn't been that you shouldn't get treated for back pain, its just wrong.

As it is documented time and time again that FND is quite common with other conditions any new symptoms should be investigated. Calling something a MUS does not mean it shouldn't be treated, to me its a cop out.