My 34 fiance' has FND, or does he?

[ash12041990]

Hi there,

I am writing this post in hope that I can get some advice/support. My 34 yr old fiance' was diagnosed with FND approximately 2 years ago (and 6 months into our relationship). It has been a rocky road full of doctor and hospital visits since then, and forever changing intermittent symptoms. He appeared to have gone into a period of "remission" for 4 months last year, however the FND symtoms soon returned, and a lot worse. Lately, he seems to have really gown downhill - his 'episodes' are much more frequent, intense and debilitating. Most days he struggles to walk/talk, zones out in 'eye rolling' fits and jerky reflexes,however, he tells me he feels different this time, cognitively like a smog of cloud is fogging his ability to think or focus, and he feels more fatigued than he ever did. Has anyone experienced this? We are starting to worry and think it could be a degenerative neurological condition?

Also, if there are any Australian carers out there - would love to hear how you manage. My fiance' has two daughters, so I have taken on the parental role, whilst also caring for him and working full time and I am only 28. We are marrying later this year and hoping to have a child of our own..... it's super tough

[Hidden]

Well im in the USA and just want to say I dont know if its degenerative but everything you have described I what I go through too. Please have faith.

FAITH means Take a deep breath and internalize that it'll be ok

[Gud4Ewe]

I have had FND for my entire life due to extreme trauma as an infant, but was only diagnosed with it a year ago. What I had my whole life is not what I have now. I was fully functional until last February when I had a massive episode that left me in much the same shape as you describe in your fiance. Unfortunately, I have no great answers, as doctors are still stumped by my condition. I am routinely told this is psychosomatic and they likely won't find a problem... while here I am, unable to human. Keep your head up. I'm not sure if you have the ability to try Full Spectrum CBD products (No THC) but I am currently experimenting with them and found 1 so far that gave me 7 hours of peace. I'm still playing with it to ensure it was the gummy alone and not some fluke or combination of things.

This condition and most like it are repeatedly listed as taking years if not decades to diagnose. Science simply doesn't understand enough about this condition. The last neurologist I saw put a hand on my shoulder and simply said "Don't let it get to you. FND is just what we call it when we don't know what it is yet. Be glad it isn't a condition like MS." While I know he was trying to help me understand, I'd personally rather find out that I have MS. At least it has a treatment plan and a respected associated diagnosis. Its better than suffering with no help and no answers in the quicksand that is FND. Just take it one day at a time.

[Regaining-control]

Is it possible to get another brain MRI to see if any changes. Presuming being Aussie he should have had one to start. Has he been able to access any rehab? I know dr Lehn is not taking any public patients from the letter I received but depends what state you are in. In the FND Facebook Australia under events I think, there are some workshops being organised to give more info. Doesn’t help now but may give you some more understanding. The hardest part is no one really knows and is exactly the same with this. I don’t need a carer as such ( my husband and kids might argue that one sometimes) but you are welcome to message me anytime ( I’m Qld)

[Ashbutterfly]

Hi Ash,

I am turning 34 in February, an American living in the UK and I was diagnosed with FND. It was confirmed by 3 neurologists over a 9 month period in 2017-2018. I have the following symptoms:

- severe pain down my right side from my neck to my foot.

- speech issues

- difficulty sleeping

- trouble swallowing

- braig fog, feels like being drunk

- fatigue

- memory loss and difficulty with short term

- trouble recalling words and events in conversation

- change in more left brain thinking from more right brain thinking.

- vision problems

- gait disturbance

- bowel issues

- stomach pain

- sensory problems, sudden pains and tingling

- difficulty controlling my hands and holding things

- sometimes twitching, this is infrequent

- severe histamine reactions - not sure if this is related, but it's new since I had this.

- no seizures that I'm aware of.

Basically, it can be pretty bad and terrifying.

My FND symptoms started following a head injury with initial speech loss and brain fog and everything else followed.

I have a partner who's dad was diagnosed with MS around the same time and we have had different symtoms between us, but the ones most prominent in common are trouble with hands and fatigue.

If you are concerned about it being degenerative, he should see someone. Its good to see at least a few people to confirm you have the right diagnosis. There is very specific diagnostic criteria for FND.

Hope this helps. Well done for stickong with him. Best Wishes for your wedding and future! X

[Momofson in reply to Ashbutterfly]

Has he been checked for Autoimmune Encephalitis? Neurosarcoidosis, or thyroid antibodies? All the same symptoms!

[Hidden in reply to Ashbutterfly]

have you seen a naturopath. you could have severe adrenal fatigue

[Ashbutterfly in reply to Hidden]

Hi @tannertick715, thanks for the suggestion. I see the neurologist and we have discussed my symptoms at length. Some investigations are still going on. I don't think I do have adrenal fatigue though. Thank you.

[Kittilyn]

Sorry to hear this. Hope things are getting at least somewhat better for both of you. I can imagine how tough it must be as a carer. I bet you're doing your best, but no doubt it's tiring & worrying; do you have people around to support you both? I hope so.

I agree with those who say keep asking for tests & advice from medics.

I think when Drs say 'functional symptoms' they are kind of giving you a 'holding' diagnosis while they still don't know the underlying cause of symptoms, so they can at least focus on treating the symptoms & help you manage whatever is going on.

But this doesn't mean you should accept FND as a final diagnosis in itself, & can still ask for more tests to find out what is actually causing the symptoms. If that makes sense?

I was recently diagnosed with Lyme and co-infections after a long time of not knowing what was wrong, & just having 'functional symptoms' on my medical notes. Now I'm getting better on the right treatment.

Good luck & take care; wishing your fiancé & you well.

[Gemmah87]

I think he should have another mri scan to be on the safe side

[Justdrea81]

I'm in the USA, but his symptoms sound very similar to what I go through. My FND is now thought to by fibromyalgia, which can cause seizures like this. The thing that has helped me more than anything is medical marijuana and CBD. I don't think I would still be working without it. During the day, I use a 4:1 THC to CBD ratio. This is enough to get the effects of the THC, but I don't get a high from it. Also, a lot of my neurological issues seem to have stemmed from a severe vitamin deficiency. Have his vitamin levels been checked recently?

[Mic67]

"FND is *not* a diagnosis; it's a recognition that a person's nervous system is in chaos." Perfect!