New Here - Diagnosed FND - but only one leg

I have had mobility issues with one leg for a couple of years and have confirmed nerve damage. I have been seeing a Neurologist for 18 months. Recently my other leg developed mobility issues but no nerve damage confirmed via EMG. Therefore I have been diagnosed as having FND in one leg. Does anyone else have this?I recently had IVIG treatment (for my nerve damaged leg) and I regained mobility in both legs almost immediately. It was short lived (2 weeks) and mobility issues returned to both legs. Very frustrating 😞

Would love to hear from anyone else with a similar issue.

[Fighter_B]

I started out having issues walking with my right leg. It would give out on me while I was trying to walk and soon both of my legs would start shaking severely when I tried to walk or stand and caused my torso to fling forwards and backwards. I had around 20 spinal injections of Cortizone and a homeopathic treatment. Within five days or so I could walk and do everything normal again. Within 3 1/2 weeks, that was gone and all of my symptoms returned. The doctor said that nerve ablation would take care of my issues. I had numerous rounds of nerve ablation, and did not get better. nerve conduction tests also showed that there was no nerve damage, even though I have nerve pain that shoots down my right leg and my buttock.

After four years, I finally found a specialist who said it was functional movement disorder. It is extraordinarily frustrating because one’s whole life is different. I used to be very active, and now I can’t stand or walk for long at all before I have to use crutches or a wheelchair. Just keep trying whatever treatments the doctors are suggesting. Good luck to you. Know that you’re not alone.

[Hidden in reply to Fighter_B]

Thank you FighterB. I seem to have had every test,scan and treatment available. I even had a nerve biopsy operation on the nerve damaged leg which was more invasive (and painful) than expected. They think my brain is confused as I have confirmed nerve damage in one leg so I now have similar symptoms on my other leg - but the hardware isn't damaged in the other leg. I have managed to go back to my cane recently since IVIG but movement issues and flail foot returning so may need crutches again. The thing is, I am not weak. I can walk but I am slow due to my floppy feet and kness that dont bend as they should. It really is strange as, like you, I was active. I miss the freedom of driving my car as I live in the country. However, I am better off than many in this group so grateful for that. I hope they find a solution to allow you to regain your strength. X

[Fighter_B in reply to Hidden]

thank you. Hopefully we all find treatment. I have been told that I’m still physically strong because I can usually keep from falling when my whole body starts shaking/flailing around, but know I couldn’t do squats and stuff now. I bought a large tricycle type bike that allows me to sit in a seat and walk. I use that to get outside and try to walk, but it’s hard on my back. The most painful area is the higher area of my SI joints, so it’s just painful to try to walk. Have you tried yoga or Pilates? I can do gentle movements with those. Plus, pilates has a lot of ground work.

[Hidden in reply to Fighter_B]

Hi Fighter_B I might try yoga as it woukd be good for my core which (as you know) is so important to keep the body strong. Legs may not cooperate tho. X

[Fighter_B in reply to Hidden]

you may look into doing a combo of pilates and yoga then. I think you’d be surprised how god the pilates can be. It’s small movements, but makes you think about the action you’re performing and the muscles you need to activate to get there. My situation is weird though because I don’t have issues with my legs losing control when I’m seated or lying down.

[Hidden]

How interesting as I'm the complete opposite with my legs. I cant lift them or move my feet when lying down but can walk by lifting my hips and swinging my legs. Not ideal for floor exercises.