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FND sufferers

2 replies

TheCanyon · 25/04/2021 19:59

I have Had essential tremor almost ten years now, properly diagnosed almost 5 years ago.

In January we had got the kids to bed and I sat down with my box of guylian. Mouth and nose went numb, followed swiftly by my right lower leg and right lower arm. I hate fuss and am very fiercely independent but told dh I needed medical help asap, I thought I was having a minor stroke. No help was forecoming. I attended a&e a few days later when I literally couldn't feel my foot. not a fun event and to cut a long story short, Blood tests showed I had low folic acid, ah ha says me, must be that. start of February it had gone.

Two weeks ago, just pottering about home and my right calf goes numb, followed again by lower leg and arm. My head/body feels like I've just got off a choppy boat ride.

Drs at first were the oh stressed/anxious lady, which I WAS NOT at all, one Dr gave me fnd action website and told me to be on my way to Google, but like every bloody Neuro condition it's so hard to tell. I don't think I meet many of the symptoms except numbness but I just don't know you know?

I certainly feel stressed to feck now. I'm 34 with 4 youngish children and a puppy and I've been as useless as hell the last two weeks. Have finally got a Neuro referral, but talking 18 months at least.

OP posts:
beautifulgirls · 25/04/2021 23:20

Sorry you are dealing with this. Dd has FND, she has had a variety of symptoms with it. We found the diagnosis incredibly hard to get our heads around and the fact that they couldn’t give medication to help, and basically neuro sent her off to psychology and discharged her from their service without any follow up or support. We are 2 years on now and in that time she has had seemingly complete resolution of her symptoms but then they all came stampeding back. Her issues are very up and down now.

There are some helpful FND Facebook groups and I would advise joining one of these and talking with those affected directly. It is very poorly dealt with by the medics really and there are a lot of people out there who need better help.

Rugby7777 · 04/05/2021 22:43

I was diagnosed with FND back in March 2020 after being ill following an accident in 2018 and not being able to walk, having loss of feeling in the body and seizures it took 18 months for me to get referred to a neurologist who diagnosed me. Within the 18 months I was waiting I had loads of test and scans and kept on being told by GP and hospital that there was nothing wrong with me it was all in my head.
I was glad when I was diagnosed felt that I was finally being listened to. My neurologist advised that usually once your diagnosed your then discharged as there are no clinics/services in wales for this condition but I have been lucky he’s kept me on and I saw him 12 months later and due to see him again in another 6-9 months just to review me. I am expecting to be discharged after my next appointment

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