I have been told by a Neurologist I have NES, I believe I have FND, Help!

NES is basically one of the FND symptoms, so it is no sense in saying one has NES and does not have FND. The problem is FND has only symptomatic treatment, anyway. If your neuro treats each of your multiple problems, it does not matter how he calls it, NES or FND. But if he refuses to help you with other things on the grounds you have "only seizures" - find a different doctor, who would be familiar with FND.

Check out fndhope.org which is run by FND sufferers. At the bottom of the Home page you will find a link to request inclusion on the private Facebook page where there are some 700 sufferers of FND and a whole range of symptoms including non-epileptic seizures, which I suffer from along with speech issues, weakness and others. There are good references to various doctors familiar with FND. Best of luck and remember: YOU ARE NOT ALONE!

Sounds like he really only understands FND/NES to a similar extent to what most other neurologists do…and he isn't aware of the very latest information coming from Drs Stone and Hallett in the UK.

If you prefer the label FND, use it. It really doesn't make much difference, as the condition is the same, whatever label you use.

He is probably correct in that you should start breathing again if you pass out. I get spasms in my diaphragm and feel like I can't breathe. I start gasping for air and get very scared about it. Then I bought a cheap little pulse oximeter and discovered that when I feel the most oxygen deprived, I am actually hyperventilating and my oxygen levels go UP to 99%. This is so absurd to me because the spasms will stop my diaphragm from moving for more than a minute each time, then I take one huge gasp of air, then it locks up again. My normal O2 level is 98%, so it doesn't seem to make sense, but at least it did stop me worrying about it.

Remember that whatever your diagnosis, these are just symptoms of something else. No-one really knows what that 'something else' is yet, but I have a feeling that we should know something within the next year or so.

Meanwhile, hang in there.

Please don't stress about this disorder. Accept that you have it, and try to move forward, making the most of each and every day, given the new restrictions in your life. See this as a perfect opportunity to re-evaluate your life and re-arrange your priorities. Enjoy each moment of each day, when you can, and allow your emotions to run freely, if they can. It is OK to get angry, to rail against the universe, to burst into tears of frustration. These are perfectly normal reactions to having your life turned upside down. I know it doesn't seem fair because you already have a fairly high 'load' with your bipolar and ME.

ps. Might be worth asking your doctor to check your stress, Cholinergic/Anticholinergic and adrenaline (Catecholamines) hormones. Some of these can interfere with bladder function. They will often check for the stress hormones, but rarely think about the adrenaline or Cholinergic hormones.

Some of your symptoms seem to indicate some interference with your Autonomic Nervous System (ANS), which I believe is a fairly common thread with sufferers of FND, though there is no research to prove it yet. I personally take Clonidine (1/2 tablet) alternated with Physiotens (200 mg), 5 times a day, around the clock every 4.5 to 5.5 hours and this calms the ANS and stops the crying and some of the other ANS dysfunctions I have.

Have ME/FIBRO PTSD and have been diagnosed too with FND or conversion. I relate. Hang in there.

What is NES?

Have you had your pituitary gland checked? My adrenals worked after my brain tumor surgery but my pituitary gland had shut off. I had seizures daily until I was put on cortisol. It took an adrenal crisis/ failure to find it. Now none. If you can -get to an endocrinologist for them to check you. Most primary doctors or GPs never check hormones. Not sure if this can help but it did for me!! Also I know many doctors use FND as a catchall term. Not all. It is still very misunderstood. Where are you located?

Some doctors use NED, some use PNES and some use FND. In other words they just dont know... One of our problems in getting the medical attention we need.. Go to the website fndhope.org. there is more information there. ... I had my pituitary gland checked and am on cortisol now... seizures are much less! they never check hormones! and take B!2!!! xxoo you are not alone

What is NES? I have ME and FND. Started with tremors/uncontrollable jerky movements in my body , head/neck/arms/legs/hands about two or three months ago. Was sent to a neuro -surgeon who said I have to see a neurologist. MY neuro is on medical leave. I am so fed up with all of this.

Have been feeling alone again with the past two weeks of medical mistakes, being sent to wrong specialist, which I questioned, then neuro-surgeon hasn't made the referral to a neuro and more of the same..