Suspected FND

[Chloelouz]

I have recently been told I have suspected FND. My symptoms began in November of last year and I went to see my doctor to advise I was constantly tired and experiencing strange periods of zoning out or feelings of floating, at this point I got all the usual tests for thyroid and diabetes and also cortisol levels as my blood sugar levels are frequently low. All tests came back normal so I just had to get on with life (I was on maternity leave so looking after my little boy kept me busy!!). I then went to the doctors in march (back at work by then) as I was experiencing speech problems, difficulty finding words and sentences coming out all jumbled up. This was then followed by black outs, the head rush every time stood up, strange sensations in my arms as if they were not attached, periods of confusion, unable to deal with noisiness and bad concentration. I was then referred to my neurologist who found I have functional weakness in both legs and states my symptoms are in line with FND. He told me to stop worrying and sent me on my way but said he would see me in 2-3 months if the symptoms did not calm down. Since then my symptoms seem to have changed a lot. Now I find my most annoying symptom is periods of numbness in both arms, both at the same time. It also feels as though soneone has attached weights to the bottom of my legs, they just feel so heavy. I have been off of work for 2 months now as the stress of having a one year old, working and dealing with all these symptoms were getting too much! My doctor advised they could not prescribe any medication during the 'watch period' between my neurology appointments as they want to see how my symptoms change. I guess what I was wondering is if they find I do have FND then I want to know if bevioural therapy and medication do improve the symptoms? I am 23 and the thought of having these symptons for the rest of my life is slightly daunting! I am trying to keep busy to stop myself thinking about it but keeping busy makes the exhaustion worse which then in turn makes the symptoms worse!

[Rachh8]

Hi there thank you for your candid post and I'm very sorry to hear you're struggling like this it must be incredibly hard with a 1 year old. I too can relate to the zoning out and the heaviness in the legs although I have FND I have many different symptoms to different people on here but I relate to yours well. I've often wondered if it's to do with hormones as I went through an early menopause just before I got it and your hormones would have dropped after the birth of your child. My symptoms do vary as well and I call it morph. I also get the speech problems but they come and go mainly when I'm stressed. I also get the numbness in my hands and feet and other things have been ruled out. I found that taking B complex got rid of my numbness altogether and also I had pains in my legs which was sorted out with vitamin D. It's almost like the brain is running too fast and using more nutrients for me. However being Menopausal can mean you need more nutrition anyway. Symptoms can improve with therapies but for me I have found the natural route better. The worst of my problems is by far the total Insomnia that I have. I find that things that calm the nervous system help that end but even then with supportive therapies. the zoning out thing stopped when I increase my antidepressants slightly. It was very strange and scary but this is what I put that down to at the time and management of the menopause. Even my GP was a bit baffled. I'm awaiting an appointment with neuropsychiatry but neuropsychology for me wasn't very helpful. I think it helps to have a good neurologist who is empathetic and supportive GP as most of my treatment varies between the two of them and I've had to see the Menopause Clinic etc and also had hormonal asthma as well. Anyway I hope you can move forward and I look forward to hearing how you are doing. Love and prayers x x

PS my condition waxes and wanes so I have periods where it's worse and then improved for some time. Some people to recover completely just to encourage. I've had mine for 5 years now.

[Kasty in reply to Rachh8]

Hi, I am looking at a potential FIND diagnosis too, but I don't anyone has asked about my menstruation yet - I have been peri- menopause since I was 39, 6 years now. I haven’t considered that this may be a part of it. Thank you. I'll shall bring it up when I see my GP and new specialist.

[Rachh8]

I made a little YouTube video about my story if you've got time and you're interested. It should come up under Google if you search FND and Rachel Harris.

[Chloelouz]

Thank you for your response! Its good to hear that hopefully this isn't going to be constant. Hope you are well. It seems a bit of a minefield so its good to hear other people's experiences xx

[Denise1968]

Hi..im in a similar boat but im a lot older and just through menopause. Its very scary at first especially when you dont have a diagnosis. I keep thinking maybe the docs missed something and its something serious as I have an array of weird multiple symptoms. I can be fine one minute then the next I come over all weak and have to sit down and it culminates into like muscle spasms in my arms. Initially i had full body tremors. Mine started after the covid vaccine. I had stroke like symptoms and ended up in hospital for 2 weeks. Now 5 weeks later my right leg is still a little numb and I have weird aches and pains and headaches and fatigue and weird sensations in my body, brain fog... when I can feel an episode coming on I go weak and dizzy and get blurred vision. Ive had three weird episodes today at work. Ive not even seen a Neurologist yet just said functional problem on my discharge letter from hospital. Lets hope that our problems are temporary and go away as quickly as they came and dont get worse..fingers crossed. X