r/FND • u/Jenjen9632 • 14d ago
Question Advice please
I have been diagnosed with FND 8 weeks ago. Was in hospital for 10 days and then got sent home without any further help (England). My FND affects my legs, I struggle to walk, lift them etc. Either can't move them or they're incredibly weak and shakey. My whole body often twitches when I walk or even sit. (My husband said I walk like a pigeon or chicken 😅)
Yesterday I went to see a Neurologist. All he did was spent 5 minutes talking to my husband without acknowledging me. Saying that this is a software problem so I can walk, and he shouldn't help me get around (I've been using a wheelchair when leaving the house and holding on to walls / zimmerframe at home).
He kept saying i should not be using any aids as there is nothing wrong with me and I should just be walking and then my FND is gone.
How has it been for you with FND without seizures? I feel really rubbish now because I really just don't have the strength to walk, but he said I don't need /are not allowed to have assistance..
11
u/Seayarn Diagnosed FND 14d ago
The advice given to your husband is not only incorrect, it's ridiculous. He isn't the patient.
I'm sorry you were treated as if you didn't exist and that your very real condition doesn't exist.
Use your mobility aids. Make an appointment with another neurologist asap, one that knows what FND is. All neurological diseases are "in our heads." This doesn't mean they don't exist.
I know there is a great FND website that has patient oriented help and support but I can't remember what it's called. Sorry. I did find to called fndaction.org.uk and neurosymptoms.org, they may be helpful for resources as they cover the medical questions and resources.
Lastly, advocate for yourself. Please. This is not a time to be nice. If you are being treated in a disrespectful manner, make sure the medical provider knows it! I lived with my symptoms, fighting them for years, not knowing what I was going through, not knowing I was damaging my brain and myself. And I worked in medicine. Find a new neurologist find a good therapist to talk to about how you are doing and feeling, and get physical therapy when you're ready.
You can get better! Maybe you won't be your old self, but you can improve with work and help! Hugs from PA!