FND What do i do when it comes on

[Fathee]

I have just recently been diagnosed with FND by Edinburgh western general, i am not back home in Dumfries and i have taken another episode whereby i cant move my body from the waist down, phoned Edinburgh and they told me to contact my GHP, his advice was sit it out, but i cant move cant go to the toilet etc, this happened on sunday and all i want to know is what i have to do when it comes on as bad as this?

[Hidden]

Hi there! I’m so sorry to hear about your experience. I just want to let you know that you are definitely not alone! I also have episodes similar to the one you have explained and they are really scary. I haven’t been able to find any relief besides just having to wait them out and if I need to move to the toilet I try to have someone help me but it doesn’t always work because not everyone is able to lift me. I’m so sorry I really wish I could have more advice! I do have a question though: do you have pain in your legs when this happens?

[Fathee]

I have pain in my legs then the numbness comes and i have no feeling from the waist down, this haoened on Sunday just now getting feeling back into my right leg albiet dragging it along, spoke with Dr Wong Edinburgh today and she advises me to get my GP to watch Dr John Stones you tube video on FND, dont hold my breath.

[Hidden in reply to Fathee]

Please do query this diagnosis somewhere other than Edinburgh. There are many conditions that could cause these dramatic and debilitating symptoms but they may well not be looking for them in this hospital. Read up and if FND feels right to you then request that the doctor who diagnosed it provides clear evidence and proper support. Not just suggests your GP watched a video of Jon Stone???

It’s not your GP’s problem - it’s this Dr Wong’s problem and they should provide help for you if your legs won’t work and you can’t get to the toilet. Your GP referred you to neurology for their assessment and this is all they can offer - a video?!?!

For instance were you given a brain MRI and lumbar puncture, were you tested for autoimmune diseases such as MS, Lupus, Sjögren’s and Vasculitis?

If so and they can’t find anything amid then háve you been offered neuro physiotherapy yet?

Cauda Equina can cause paralysis from the waist down and can happen fast so please don’t assume it’s FND - you need to get to hospital and have an urgent MRI of your lumbar spine just in case. Have you had one in the last week to exclude this?

Once Cauda Equina has been excluded then the last 3 diseases I’ve mentioned are rheumatic diseases that can cause neurological symptoms very similar to MS.

Unlike FND they are organic but can only be diagnosed by experts. These experts aren’t neurologists but are rheumatologists and it costs NHS Scotland money to send patients to centres of excellence for those diseases in England. There are rheumatologists in Dumfries and Galloway but they may not be able to look beyond FND.

There are other rare conditions that can cause a collapse of the nervous system as you describe. Have they excluded ALL of these before making a diagnosis of FND for you?

It seems that the Western General neurologists are very keen to diagnose people with FND and send them on their way without any back up plan if things such as this happen.

Please get more information from them and don’t assume they are right. It’s my hunch that they are acting very irresponsibly by diagnosing you with this without proper practical help and advice beyond suggesting a video?

[Sparticas123]

Wot I do is try to stay relaxed and calm the more stress y get and worry makes it worth you got to lie down and relax your brain because we. It comes on your brain is miss sparking sending wrong signals to your body the only person that can cause it down I just imagine I'm lied in a field of flowers put any other thaughts out of y brain it works for me just keep practicing relaxing and it gets better

[Sparticas123]

Canabis oil or smoking it totally controlleine simtoms stop totally Wen I have the oil but it is not cheep

[pickleweed]

Wear a diaper (like underwear these days) and keep water and a phone nearby at all times.

[lily82]

Please try and get a second opinion. Contact this organisation, they specialise in getting second options. They helped me when I was misdiagnosed with FND. Too many of us are...

hdapatientcaretrust.com

[bluefall]

How are you doing now?