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

[lewis1jake2]

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

[kotovasv]

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.

[lewis1jake2 in reply to kotovasv]

Thanks so much, does anyone know how you find another Doctor in the UK? I live in Leeds

[kotovasv in reply to lewis1jake2]

I live in Russia, so can not help But look at the Facebook page dedicated to FND (you can find the link through the fndhope.org or neurosymptoms.org websites) - there are many FND patients from the UK on the FB page.

[lewis1jake2 in reply to kotovasv]

Thankyou so much for your message I have joined the group now

[EnglishIslander FND Hope Volunteer]

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!

[lewis1jake2 in reply to EnglishIslander]

Thankyou so much for your message I have joined the group now

[VivienneWaterworth]

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.

[lewis1jake2 in reply to VivienneWaterworth]

Thank you so much for all this information. I am just so annoyed as the pains in my legs are terrible. I could cry some nights with the pain and he just ignored me when I told him about the pain and swelling. I think I will ask for a second opinion as I am only getting treatment for the fits, which is a pyschologist. I am finding this really hard as they want me to stop doing some cleaning which is hard as I have an OCD and if I cannot clean I get really anxious, they also want me to change my diet which is hard as most foods cause me so much pain in my stomach, IBS.

[Tewa in reply to VivienneWaterworth]

I experience the same with spasms in my diaphragm and shortness of breath. The spasm are so severe and painful that it hurts to touch my upper ribs for several days after an episode. I had, had in the past been put on oxygen due to low levels, but most of the time when this happens, my oxygen level is fine. So, the docs say..you are ok.

[7yearsgone]

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

[Tewa]

What is NES?

[Seaotter2020 Volunteer FND Hope in reply to Tewa]

Non epileptic seizures

[Tewa in reply to Seaotter2020]

Thanks Seaotter. Home Health aide who helps me with showering said it looks like I am having seizures. Had an eye test recently...have had double vision since this all started in Nov 2009. The eye test was the ice bag test. EYE dr said it was positive for Myasthenia Gravis. Was diagnosed with MG three years ago, then neuo here in VA said no, but I am still on medication for MG..Mestinon. First I got an MS diagnosis in 2010. Then no...do any of these drs know what they are doing?????

[Seaotter2020 Volunteer FND Hope]

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?

[Tewa in reply to Seaotter2020]

I have not had my pituitary gland or my adrenals tested. I requested an adrenal test, PCP said no...she wouldn't order it. .I have considered an endo. Cannot take cortisol though. Have many sensitivities to prescription drugs and chemical etc.I went on a very good Adrenal supplement and it does help a bit. I am in Virginia. I moved back here due to the terrible medical care in Montana. It isn't much better here.

[Seaotter2020 Volunteer FND Hope]

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

[Tewa]

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.

[Tewa]

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..