FND- what to expect

[brettf123]

hey everyone,

my wife is experiencing a great deal of these symptoms and has just had the all clear on CT and MRI scan for any phsyical brain damage, and was directed to the neurosymptoms.org after a rushed check as an inpatient in hospital, i am just looking around the net for all info regarding it.

a lot of varying stories regarding how people cope etc, but we weren't really given a direction to go in by the Neurologist as he just pretty much rushed off.

we do also have an appointment this monday at Walton Hospital in Liverpool where we are hoping to get a second opinion and hopefully some solid info on our next steps to assist her in improving her day to day life.

just wanted to say hello really and to ask people on their experiences.

symptoms

chronic fatigue,headaches,forgetting words,lack of balance when walking, pain in upper thighs which she describes as bone being pulled apart, blurred vision, putting things in strange places i.e. tin of tuna in TV cabinet drawer, sensitivity to bright light, the list really does go on.

brett

[LEEJUNFAN]

Hi Brett,

My wife Kim has FND, and, like your wife, had the brain scans and other tests to rule out anything such as Epilepsy, MS and Parkinsons.

It's a case of elimination and it can be a lengthy and worrying time.

Kim has many of the issues you describe, such as light sensitivity and she also has become extremely sensitive to noise issues.

She also has mobility issues and had to give up her Hospital job at aged 34 years and I am her Carer whilst working part-time.

Bonfire night, which we used to love, is now a nightmare because the bangs can make her legs tremor and also any other part of her body.

As you have not had a diagnosis for your wife yet, I cannot obviously say she has FND, but her symptoms obviously correlate with Kim's.

If you need any advice or feedback, then please don't hesitate to ask me.

This site is full of helping individuals who will only be too happy to assist.

All our best wishes to you both.

Tony and Kim xx

[Lima-B in reply to LEEJUNFAN]

Hi,

Reading all stories, I thought I didn’t have FND as I thought my symptoms - comparing to all the others - were really mild, apart when I went to hospital, suddenly paralysed from the neck to my feet. After a week, maybe 10 days, all went normal and I just joined healthunlocked because of the neurologist advice. Reading your wife’s symptoms now, maybe I could be a bit in denial as I feel I’m becoming very sensitive with noises, cannot bear loud TV, it makes me suddenly explode and shut it down for immediate relieve. The only problem is I don’t know if some things like forgetting words, aches and pains are symptoms or only sign of ageing... I’m 59 and feel healthy apart this minor issues.

[brettf123 in reply to LEEJUNFAN]

Hi Tony,

thanks for taking the time to respond, my wife is 32 years old at the minute, and for the minute is coping with work, luckily she works for my Mum who has been really understanding, she tells me she has been falling asleep at work regularly, as she is constantly tired.

my wife walks as though she is drunk and cant control her legs, im just praying that things improve and dont get any worse... which it has been doing steadily since around April this year.

Brett

[LEEJUNFAN]

Hi Brett,

Sorry to hear about your wife's symptoms and so young too.

If it is FND, the symptoms can vary from hour to hour, day to day, and the tiredness is a major factor due to this disorder being so taxing, mentally and physically.

Make sure you ask plenty of questions from your wife's Neurologist Brett, which I'm sure you're doing anyway.

You mention that the Neurologist advised you to come on this site, which probably indicates that he or she has an idea it is FND.

Did the Neurologist actually say it is FND that your wife has Brett?

The mobility issues are one of the most worrying with FND.

After Kim collapsed in front of me, her right leg went into Spasm and she was in a wheelchair for 4 months, then leg braces, which she still has to wear.

We both pray that your wife's symptoms stabilise and all respect for her still working because that's what people with FND who've lost their jobs, really struggle with.

Isolation is not good at all and a strong support mechanism is vital for you and all the family because this condition affects everyone.

I know every feeling you're going through Brett and if you ever wish to talk to me then please don't hesitate to ask for my email or number.

Our sincerest wishes to you both.

Tony and Kim xx

[Hidden]

Hi Brett

I was diagnosed with FND at the beginning of august, i was also diagnosed with fibromyalgia and rare migranes..the symptoms your wife has is the exact same as me, i never noticed anything wrong..it was my family and friends..when i finally went to the doctors (after months of nagging) i was rushed to the nuerologist..i am still having memory problems, walking,right sided weakness, putting milk in the washing machine, swearing and pain but i have since began a new job which is less demanding physically and mentally..i received loads of support from my gp more than the nuerologist..i had a month of giving up..was depressed after being diagnosed but i had to get out there and try and lead some kind of life and that was with the support of friends and family..also medication..but everyone is different..their symptoms worse than mine..but support is the best medicine.. i hope you get the support and answers..and take care

[Ccaldwell]

I have found it helpful to think of FND as a 'relapsing/remitting' disorder, much like MS. Sometimes my body and mind are absolutely fine, then at other times the signals are getting crossed somewhere between the two. I explain it this way to others as well, as it is a simple way to let them know what is happening.

It is not easy, and at first it can be very frightening. The good news is that there is nothing wrong with her brain (as indicated by the scans).Now the task of learning what you can about the disorder, and doing what you can to improve the symptoms, as you stated. This fndhope.org website has by far the most comprehensive information, and the webinars are so encouraging. I recommend you watch some when you have the chance.

Keep asking questions and venting to all of us. We are here to help you through this process. I have had symptoms since 1983, so I can tell you that you can have a good life, and raise a family, and have a career with FND. The key is to keep hope and a positive outlook. Laugh at it. When you think about it, this is a very fascinating disorder. I am always so astounded at how my mind and body work!

Cheers, Carol

[brettf123]

we have been to Walton Neuroscience outpatient's department today and saw a nice Doctor who was pretty certain it was the chronic migraine section of FND and has advised as a first course of action is to detox from all analgesic medication i.e. paracetamol, codeine, ibuprofen-to eat regular and to drink plenty water we have seen somewhere about caffeine so she is going to cut that out as well.

she said that it will get worse for the next few weeks while her body detox's but to stick with it for around 8 weeks.

at least we have a course of action to try now and it was actually told to us what it is and some direction to go in and they would review after the 8 week period to see what to do after that..

for now we are a bit more positive!!