just diagnosed with FND

[dave73]

I have just been diagnosed with FND,i have MS like symptoms but my MRI came back clear.

over the last 2 years I have become progressively more physically disabled my chief complaints being difficulty with balance,standing and walking,fatigue and dizziness and spasms.

can I expect it to get worse ?,it's certainly got worse over the last 2 years.

I don't know if I really understand this diagnosis,it's not something I've heard of before.

the local hospital wants to send me for more tests,i'm lucky in that I have a good relationship with my GP.

I fear I may have a quite serious case of FND,i'm in a right state with this.

I was a musician for many years but now I can't play anymore,it's affecting me in all sorts of different ways.

so having been diagnosed where do I go from here ?.

[Seaotter2020 Volunteer FND Hope]

Welcome to this family. I know my suffering lessened when I learned mindfulness and other skills, got off gluten. And mercifully was given cortisol in May when hospitalized and they also found me to have a B12 deficiency . Two simple but neurological influencers. Get your B 12 checked if nothing else. It may or may not help. I have only had two small seizures in 12 weeks. To me a miracle with other effects like better balance, sleep and cognitive improvement. FNDHOPE.ORG has other great recommendations for healthy living. The mental stress of this disease can be overwhelming I hope you have a good network of friends and family. I needed skills to help me. I hope this helps .

[skifast]

In same boat so many symptoms Drs have hard time comprhending. National Institute of Health or Emory University

[malalatete]

Dave, go to Mark Edwards, Hon consultant neurologist at the National Hospital for Neurology and Neurosurgery in London. He specialises in FND and movement disorder, did a lot of work with a guitarist who became unable to play because of tremor, retrained the brain to deal with it. Helped me to improve my mobility by a degree too.

Your GP can refer.

[jrgreene]

I happened to stumble on your comment, look on Facebook 'fnd hope' this seems to be where we all hang out!! It's a private group so no one outside of the group can see.

[3103Cookie]

Hi Dave, welcome to the Fnd!

As you probably have already guessed Fnd sufferers have a broad array of symptoms resulting from the condition & I like you found the diagnosis very difficult to understand & cope with initially. I'm 3 1/2 years from my diagnosis & I am now sadly registered disabled, had my license taken away by dvla, unable to work & spend 60% of my time bedridden. My symptoms have included paralysis, non epileptic seizures, slurred speech, double vision, brain fog, CFS/me, Ptosis, Hemiparesis, bladder problems, photosensitive along with the usual walking & balancing problems. If your able join the Facebook pages for Fnd, we now have a UK version of Bridget's brilliant FndHope page & without this I would have been totally lost 3 yrs ago & is where I have gained most of my knowledge but also go to neurosymptoms.org as this is fantastic for the medical info.

The biggest thing to understand (which I struggled with) is that most of the tests that you will have done will come back clear. This doesn't mean your faking, it doesn't mean that your not very ill - you are & remember Fnd's symptoms are predominately caused by the central nervous system miss firing so could therefore manifest as anything. My Gp's surgery have ensured that I only see one doctor at the practice which means I don't have to explain everything from scratch. This is sooo important & ensures continuity of care!

Take a deep breath when you can as unfortunately, this is possibly the best you will get ....... Some people say you can recover from Fnd, I don't believe you can but You can control the symptoms with good management & really strong pain relief. If you are offered any tests or support - take them & if you don't know what is going on, Ask. Take care of yourself & I hope your symptoms ease up for you. Nicola x

[angelite]

Hi Dave,

Sorry you haven't had any medical answers yet but the fact that the hospital wants to do further tests shows that they have other things to rule out yet.

FND is not an illness in itself but rather a category where people of varied neuro symptoms who have had clear test results ( particularly brain scans ) are put for convenience.There does seem to be some confusion between doctors as to the definition of FND. Some believe it is of neurological origin, others insist it is purely psychological, as in conversion disorder. MRI is good but not God - not all details are always captured, contrast dye is helpful for showing inflammation and further detail but sadly often not used. White spots on scans can potentially be misinterpreted as signs of natural ageing.

webmd.com/multiple-sclerosi...

So I would say that although you have been put down as FND at the moment, your diagnosis could change according to what is found on further tests.

Kind regards, Angela x

[Tewa]

Dace,

I am sorry. My story is very similar to yours. First diagnosed with MS, then not, diagnosed with Myasthenia Gravis, then not. I do have MS and MG symptoms, but tests that have come back positive are not confirming either one. Last week diagnosed with FND.

I am so much worse in the past 8 or 9 months...with shortness of breath on any exertion, swallowing and chocking problems, weakness on exertion for just about any activity...all symptoms exacerbated with new ones too.. I have to sit and rest after any activity, do something, then sit and rest...this is how my day goes.

I am an artist and and a writer and have not been able to create art for going on 2 months now. I use a motorized power chair to get around the small town I live in in Virginia. Went over a month so weakened that i couldn't use the chair due to my having to keep it going with pressure on the lever.

Have been trying to find a physical support group close to where I live. No success. It has already helped me to connect on this is and read about the struggles of other and what maybe of help. This is truly the worst thing I have ever had to deal with.

I now have a very good neurologist and GP. Good that you also have a supportive GP. Read about what others are dong to help themselves and get support on this site.

Positive thoughts and prayers coming your way.

Johanna

[Gypsy_67 in reply to Tewa]

Hi. In the last 18 months I was diagnosed with fibromyalgia, then IBS. A week ago I was finally diagnosed with FND, so I feel your pain.

[Tewa]

Dave,

Sorry about miss-spelling your name. It is late and the fatigue is showing up!

Johanna