To say that I am very happy is an understatement, although I must contain this.
I have been suffering from neurological symptoms since 2009 and yet no one has been able to confirm what the problem is : myoclonic jerks - which are extremely painful, paraesthesia in my legs and more recently Blepharospasm with jaw clamping. Until last week when I was involved in a car accident: 17 in one day when I normally get between 5/8.
In pain I visited A&E and.... the trauma surgeon confirmed that I had FND! If this is truly the case - and I'm waiting to get it confirmed - I have to say... I'm pleased that we had the accident - even though I'm in pain! So... HALLO fellow FND sufferers!
Written by
abb356
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Mine started with my left leg shortly after I had spinal surgery but the neurologist says FND is caused by stress not an operation my theory is I was ok before the op then I’m not I believe FND started due to something that happened to me while I was on the operating theatre.
From left leg moved up to my left arm which meant I was sometimes paralysed on both limbs for up to 20 to 30mins then I developed bad vertigo which still comes and goes next was a tremor in my hands.
Then one day I woke up and couldn’t me either leg then a few days later woke up paralysed on all 4 limbs which lasted 20 to 30 mins. Next I was paralysed just my arms not doing anything just watching tv this time it lasted just over 3 hours.
Now I get severe leg shakes or either arm can start violently shaking so bad it hurts. I was told I should get better and it will take about 12 months, now 13 months and it ain’t getting better it’s slowly taking over my body.
I’m unable to lift either leg when laying flat cannot raise my knee/leg when I’m a sitting position. Been informed that I’ve lost my strength in both legs hand won’t do finger thumb cannot even get first finger to move to my thumb so co co ordination of my hands severely affected. Again lost strength in both arms as well.
Short term memory is shot as I failed all short term memory questions on the memory test done at the hospital so that causes me a few problems I can be talking to someone about something stop and then cannot remember what I was talking about and then just get weird looks.
It’s just totally consuming me at a rate I don’t like as I read a few people where the paralysis has stayed full time and certainly ain’t looking forward to that I must admit but got to try and think it won’t happen to me but I can see it happening one day.
Take loads of tablets for this and lower spinal problems where I’ve had two operations on and neither have helped me full time and just had another MRI and may need more spinal surgery which I’m hesitant about given what’s happened last time.
Also suffer from chronic fatigue where doing the simplest of jobs leaves me knackered and I can sleep for 14 hours sometimes then wake up for a little bit then nod back to sleep.
My wife has progressive MS so she is suffering with similar symptoms to me as they both affect the body the same way whereas hers is the brain not doing what is should and mine where the brain is fine but connection from brain to body parts just dosnt happen.
Never in my wildest dreams did I expect to end up like this from a disorder I had never even heard off.
I am so sorry for you both. You must be in a living hell!
Have you been diagnosed with FND and how did they come to that decision?
FND IS a condition in its own right. Just like CFS. Just like MS. The fact that someone may have said to you - like me - that's its in your own head be there is nothing medically or organically wrong doesn't alter the debilitating condition you have.
My condition started after I contracted Guilliane Barre. I had pins and needles in my feet, legs, travelling up my hands and arms, kept falling over: up or down stairs. Taken into HDU for two weeks. I was left with post-viral chronic fatigue. I was in bed and slept continually for nearly 2 years. I could be eating or on the phone and fall asleep. I even fell asleep while in a restaurant in my Lobster! It has taken 10 years to get well enough to function.
What has become apparent is this.
1. I worked my butt off for years. I know everyone does, but my body couldn't sustain getting up at 16.30, working until 2.00 am, sleep for a couple of hours then back again.
2. My body couldn't cope with the fact that I only ate a evening meal. I didn't realise I was deficit in a specific hormone
3. I didn't realise that each trauma I encountered whether mental trauma or physical trauma affected me subconsciously. We all have baggage and we take it in, thinking we can deal with it because we are off a certain age or because it's expected of us. We never do.
4. I know the Myelin Sheath was damaged in my legs. I can't walk for long distances.
5. I know that my bladder was damaged in an op so it only holds 125ml.
The list is endless Mark. But the difference is this.
I have stopped grieving. Grieving for my old life. Why would I want it when it ruined my health? Stopped grieving for old traumas. I want more out of my life.
Your wife has a horrid condition and you must be grieving daily. It is understandable for your body to be shocked after an op. When I had my accident in November I was having continual myoclonic jerks. My jaw was clamped. I couldn't talk and had my neck in a brace. Trapped in a body that wasn't functioning and I couldn't speak. That was truly awful. Relying on my husband to anticipate my needs. You could think that my body had said ENOUGH! But in reality it was part of the 90% subconscious brain that was telling my body that it had enough. Thankfully the Locum recognised what was happening and now I'm beginning to function. Slowly. I still have the occasional myoclonic jerk but I have strategies to deal with them. They could last up to 30 minutes. Now they last a minute at the most. My excessive sleepiness is a form of narcolepsy which when I look back, I've had since a child. This is managed by meds. My legs still need a bit of work but I don't need sticks for walking around the house. Walking outside for long distances will take longer but I'm moving forward and not back.
What I'm saying to you Mark is this. Go and see a FND specialist. Talk to them and be brutally honest with them and yourself. . If someone has said you have FND, ask to go on a programme. BELIEVE that you and they will be able to help you function on a day to day level. Not just for your wife but more importantly, for YOU.
I have been diagnosed by two neurologist in Taunton Somerset and also spent 3 weeks in the Ross Burden Center in Bristol which deals with FND and Huntington’s and other neurological disorders.
Done meditation mindfulness etc apart from the FND I have lumbur spinal problems had spinal fusion at L5 in 2009 after a industrial accident then last August I had a disc decomposition At L5 which for about 8-10 days eased my spinal pain problem is pain is back with a vengeance so take a concoction of about 30 pain killers nerve blockers a day and have oramorph when required just to cope with the pain. Surgeon done another MRI and says I can have surgery if scan shows something he can operate on.
If it shows something and he thinks best not to operate on it then I’m stuck with this lower back pain that scores 10 out 10 a lot of the time then again if I have surgery will it make my FND worse so just waiting for Hospital letter.
You've been through it and some. Why do they think you have FND? You are obviously in a lot of pain and I can understand how Mindfulness and CBT can help ; I taught it to my late 95yr old father in law when he developed Giant Cell Artertis and Peripheral Neuropathy in the tips of his fingers.
If you had a good op, will you no longer need the tablets?
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