Diagnosed FND

[Joanne78]

Hi as a registered nurse my self I have now been diagnosed with FND. I worked Neuro for 20 years so this is a bit of a shock. Anyway woke up numb face and no hearing right side. All tests came back normal. Trying to get my head around it. Apparently mine is from the trauma put on my body after a vaginal hysterectomy. Of which if I knew I would not have had this done. Period pain would have been fine. Numb face and ears is not. So discharged and basically told to get on with it. I'm a runner but scared to run now on my own. Which isn't helping. Any advice would be great xx

[Mikey1960]

Hi Joanne

Trauma was my cause due to a three month period of various serious health problems. 2 years to diagnose me now been waiting 8 months for a appointment with a physiotherapist.

Still can’t go out on my own tremors and dizziness and also days l have to lie down as l feel so sick and nauseous.

Hope things go better for you.this was the first time l had been seriously ill.

I lost my job, never not worked in 58 years.

This is I feel is very hard to cope with.

[Mat08]

Wow Joanne making your life a lifestyle that cares and helps others touches me Joanne 10yrs ago I was running 15miles a week but over the past 10yrs wheel chairs disabled frames professors of neuro science in abudence all teeth removed the works now Joanne I am ex forces and I am bloody fighting back I am now classed as untreatable by the NHS Joanne I have been trying something new with a research team in Sheffield the treatments have been on going for about 3yrs at the moment it's a bit hush but on Sunday I am getting taken to a athletics stadium for my first attempt at running now i have a lot of personal trainers but we just don't know how my brain will react Joanne your body is depleting of protiens you just don't know it yet please don't wait ten yrs to find this out that's a bit too late this info came from Birmingham biological unit please look at lectin,pectin,lechatine, glutamine,acidophilus,femaglobin liquid, and b12concentrated liquids Joanne I have lost everything business, wife, home,kids,and my bloody cat lol the wife even took the cat but I have my sense of humour and the will to try improve my condition now i sufferd a trauma during surgery on a tuma too close to centrel nervous system in the kneck infact two opperations same area game over so please let me do my run Sunday and I will let you know the results big respect mat

[RobertWT in reply to Mat08]

Mat - you are a hero! Bloody good effort!

[Lovelyhols]

My advice to you is to try and stay positive and try to live your life as normally as your body will allow. Getting on with it yourself is the norm for Fnd but thank goodness we have the support of each other on this forum.

Lynn 💕

[RobertWT in reply to Lovelyhols]

Spot on Lovelyhols

Getting on with it yourself is the norm!

Couldn't have expressed it better.

R

[RobertWT]

Hi Joanne

Welcome to FND Hope. We are as varied in our signs and symptoms as we are in numbers. Myself, I have poor stability, speech problems and high anxiety attacks all tracable back to a post-op chemical clash in Nov 2016. Diagnosis came about 8 months later after the (initial) neurologist gave up on me and I saw a neurologist from the UK (I am in Ireland where the neuro-cadre is, well, still, how shall I put it, not very sympatico, or knowledgable. No-one knows or wants to know, unless you are a private patient and willing to spend €450 and hour for 'I think that, maybe, possibly it might be ....' type advice. Then dumped after not following up on MDT cooperation. (Rant over!)

General advice:

Every day is different (expect the unexpected!);

Keep going;

Do not expect a swift, simple or medicine solution. There simply isn't one, yet;

There is HOPE and there is support. There is FND Hope;

Keep going;

You are allowed to rant and howl at the moon, on here, if it helps. Often it does;

Please share things that work, things that don't and your reaction to the whole catastrophe (Zorba the Greek!) We actually may have the secret, even a piece of the jigsaw, that could move research forward an increment;

Keep going;

The medical profession mainly do not know or understand FND. I have perfected my patter about FND, its causes (mainly un-known but trauma or some sort - physical, emotional or mental - seems to be a common theme), triggers and effects. I find that I frequently have to instruct doctors, physios, triage nurses (I am also bipolar, well controlled for years, but the shades tend to come down when I mention it, particularly if they are still labouring with the neurological tag!);

Keep going;

New research is being conducted all the time. Look out (on the FND Hope website for Glenn Nielsen's interview which describes a very exciting 4-year research programme;

Do research on FND. Become your own expert on itr. Look at the various articles on FND Hope (pages written by Mark Edwards of Jon Stone are VERY useful.)

Keep going;

Try to avoid the mindset shift from "Can it kill me?" to "Please can it kill me?"

Keep going;

Stay positive.

I use:

Buddhist chanting (just ask, I will steer you in the right direction);

Minfulness (at a very early stage);

Positive thinking (OK so I don't always succeed with this one);

Crying (my emotions are all over the shop. A big girl's blouse, really. But, if it helps .....)

Please keep in touch with the group. Expect a whole clutch of other responses (we are a social group). We seem to be approachable. I invite you to dive in and join us. You are qualified to do so! (unfortunately)

Robert WT

Did I say "Keep going"? Oh yes......

[Hopeful40]

I would recommend to be seen by a Lyme Literate Doctor to rule out Tick Borne Illnesses as the underlying cause of your symptoms. After being diagnosed with FND I felt led to continue searching for the underlying cause. I was unable to accept that my body just stopped working correctly and that there was not an answer. At that time I was not aware that there is Acute Lyme and Chronic Lyme. The conventional medical and Center For Disease Control do not recognize Chronic Lyme which unfortunately is leaving so very many being misdiagnosed and not being treated correctly. It is more comlpex than we realize as I never would have thought Lyme Disease and co-infections(which I had never heard of.. Babesia, Bartonella, Mycoplasma, Anaplasmosis are a few) could cause the symptoms that I was experiencing. I also never remember having been bit by a tick. I have learned that a trigger event can cause this to activate in our body like an accident, illness, surgery and other things and it can remain dormant for years. It is when our immune system is effected or weakened that one can start showing symptoms because of this. Symptoms of FND and Lyme Disease and co-infections mirror one another.

Unfortunately we have to step out of the conventional medical for guidance, testing and treatment however if this is the underlying cause improvement is possible with treatment.

May you and all that are not well find your answers to regain your health.

[Joanne78]

Thanku all for replies. X

[Gud4Ewe]

Normal is simply an illusion. What is normal for the spider is chaos for the fly. My diagnosis has been an interesting ride that took 42 years. Here are the things I strive to remember, and keep actively remembering for the rest of my life.

1. You are not sick.

This is not an illness. This is a normal function of your brain. The fact that what it produces is unexpected is irrelevant to the issue itself.

2. There is nothing to fear.

What we all most fear is loss. Losing the ability to jog unattended, having to change things you have always done. These are losses to who you know you to be. The brain of a person with FND is simply not biologically capable of the average expectations of social society. This doesn't mean stop jogging. It means, take more time. Perhaps going back to walking before you run, in this case, can be more than just a metaphor.

3. This is not in your imagination

This is really happening. Those feelings and movements are you. It is simply your body reacting to an emotion. When you feel it coming on, slow down and think. What am I feeling right now? What am I thinking about? What was I doing? Was I doing more than one thing at once? Controlling the speed at which you face and process emotions is key to getting you back on track. Everyone says practice mindfulness, but this is why it is suggested. We are fighting against our subconscious. It can't be controlled, but it can be trained. Sometimes just the act of thinking of more than one thing at a time can be subconsciously stressful and cause events to rise when we are not expecting them. This condition requires us to stop and smell the roses. Often.

4. Get on with it.

This is hurtful to hear. It is terrifying to do. It is the only way out. The caveat here is that YOU are normal for YOU. Not for anyone else. Your "Normal" is now and will never be my normal or anyone else's. It will never be a textbook "normal". That doesn't mean you are broken or that you aren't "Getting on with it". If you opened your eyes, put your feet on the floor, and pushed yourself through another day, you are getting on with it. The real question is, are you learning to live with it? Are you learning what it is to be you? What is your normal? Embrace that person. That is who you are.

5. Let go.

As we age, we can no longer compete with our younger selves. It is the march of time and it waits for none. Is it possible that you will get back everything? Yes. Is it possible you will get back nothing? Yes. What does that mean? It means we can't grieve over change. There is no time for that. If you have to give up one thing, find a compromise in something else like yoga. It is only a suggestion but could help you build the strength and confidence to return to running.

6. Love yourself.

This new you, is still amazing. It is still full of love, life, stories, and experiences. You now have a unique gift. You empathize at a whole new level. The new you isn't broken. She is evolved.