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

I have M.E and Bi-polar disorder, A year ago I had what the hospital said was a stroke until I had a MRI & EEG.I was then told FND by one person and at A &E and NES by a Neurologist. My symptoms have been getting worse, I have the seizures practically daily but I also have Migranes, bladder problems, a condition with my eyes that need botox injected into my eyelids, Foot turns in and freezes, hand claws, body stiffins until I stop breathing and pass out sometimes and foot turns blue, problems sleeping, Anxiety, pain in my legs and arms and neck which can make my legs give way,involuntary movements, twitching, Photophobia, feeling of electric currents in my body. Obviously I do not get everyone every day, but my life is becoming a nightmare living with this. The Neurologist when I asked him 4 times if it was FND said no it is NES that is causing me the most upset and discomfort.I assured him the other things were making everyday living hard and he still said No. He said this was happening because I do not get 'Stressed enough' and this is a vent for the stress to come away. I am on medication for the Bipolar so is it a case of I come of the medication to be stressed or live with this! I feel I have more than NES and I am not been listened to. Is there any reason why he would not give me this diagnosis do you think? I am really upset and Angry, of course I do not want NED or FND but I just want to be correctly diagnosed. He told me on an upside to my body stiffening and stopping breathing that I would pass out and breath again! Happy days then, I am sure my children would be reassured if they saw this happen. Please help

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VivienneWaterworthVolunteer

4 years ago

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.