So limited information any suggestions?

[Lilac3]

Hey all,

I'm recently thought to have FND to go with my Fibromyalgia ( 2yrs) & arthritis ( many yrs) & now awaiting the referral that will put me on a long wait list to see a FND specialist. I can read so much & identity with so much but find it hard to not search for any kind of treatment? There seems to be so little knowledge of this condition in the medical world? I feel frustrated that I can't seem to find help, my husband is keen for an independent 2nd opinion? Any suggestions?

Thanks

[M3rry]

Go for a second opinion - make sure all other options are eliminated.

The reason I say this is because the things known about FND are that it's an old condition - very old which is why if you look hard enough you will find it has many old names. It is real, researchers have found a difference (not known if it is causes or is caused by FND) in fMRI - not currently a suitable diagnostic test though. And unfortunately it isn't rare, some people claim it is more common than MS.

What isn't known is how the disease works - no pathogen, no disease mechanism, no 'take this and try it' random drugs that do anything other than relieve one symptom at a time.

If you do have FND use your experience with fibro - I have found that the same management works for FND as well - accept the disease, don't stress it, don't exhaust yourself, do what you can not what you want.

[Redbeard_33]

Hi Lilac. You're right, there isn't much info out there. I'm on a waiting list for a neuropyschologist so when that arrives I'll be sure to let you know how i get on with it 👍🏼.

I would go for second opinion, it's your health, so be sure.

Take it easy,

Lee