Newbie looking for information.

[sparemetherescue]

Hello I am newbie!

I am 21 years old and was diagnosed about 7 months ago. Up until today I had never been able to find anyone else with FND.

I was 8 months pregnant with my first child when I started to lose function in my right leg. I wasn't diagnosed until 5 months ago when my physio and GP refered me to a Neurologist.

Some days I can not walk others I can but only while being supported. I have falls because my leg will give way at any moment. It also has tremors that I can not control as well as constant pins and needles in my feet right up into my knee.

My lower back is in constant pain sometimes I get the sensation of cold running water run down it. My memory is terrible.

I am currently doing rehab twice a week with very little improvement.

So my questions are has anyone have anything similar to me? If so have you improved and what helped you to? Is there anybody else in Australia on this site? Also has anyone else had FND come on during pregnancy?

I am trying so hard to get better for my partner and our son. Any answers would be a huge help!

Thank you in advanced!

[EnglishIslander FND Hope Volunteer]

Hi. Yes there are plenty in Australia and New Zealand, plus many around the world with FND/NEAD. There is a larger Facebook Group for support which can be accessed via their website FNDHope.org, written by FNDers for FNDers and their Carers. Also worth checking out neurosymptoms.org written by a Neurologist in Scotland specialising in FND. If you go to the Fndhope website and scroll towards the bottom of the home page you will see a button requesting to join the Private Facebook group. There are over 650 members and always someone around to provide support, information and a should to cry on if needed. Good luck and hope to see you there. Duncan Peacock

[sparemetherescue in reply to EnglishIslander]

Thank you very much I added the group last night.

[trophywife]

it sounds like you need a second opinion.

[sparemetherescue in reply to trophywife]

I have seen three different neurologist who have all said that I have FND. One of them has done studies with the person that created neurosymptoms.org that is who my neurologist is now.

[trophywife]

im sorry I have nothing but my prayers

[sparemetherescue in reply to trophywife]

That's okay thank you very much though.

[Sweet_lilly]

Hi, for about 10 years my legs felt heavy like I was walking in cement. This progressed to the point I couldn't walk because if the numbness from my knees to my ankles with swelling. Finally, my Dr. Referred me to a neurologist who performed a test. In formed me I had Peripheral neuropathy and said to walk even tho painful. After complaints he finally prescribed gabapentin. I am on my 6th week with 2 pills per day. Has not helped. Now I have pain in my upper back which is unbearable.

[sparemetherescue in reply to Sweet_lilly]

Oh really wow I have never actually heard if that before. Is it the pain that stops you from walking or something else?

[VivienneWaterworth]

Sweet Lilly, peripheral neuropathy can be very painful to walk on. There are a number of types of painkillers that can be used, so if Pregabalin doesn't work for you, ask to try a different type.

Do you know what caused your peripheral neuropathy? diabetes? chemo? poor circulation to your feet? FND?

My partner feels like he's walking on stones all the time. He bought himself some sandals that are very soft and have the proper arch support, and he wears them all the time…with socks in winter and for getting dressed up even. Because he always wears the same sandals, his feet have gotten used to them and so walking isn't quite so painful for him. When he had to purchase new ones recently, same brand but slightly upgraded style, it took a week or more to get used to them before the really painful stones 'disappeared' from under his feet.