Functional Neurological Disorder - FND Hope
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Temperature sensory changes FND symptom? Confused!

I have recently been told by a neurologist I might have FND. He told me to look up neurosymptoms.org to better understand it whilst waiting for full MRI of head and spine to rule out other things. I can say that maybe 90% of my symptoms can easily fall into the FND category however, I have some symptoms that I can't find an FND explanation to. Even though my current symptoms have effected my mobility, I would feel better at this being the diagnosis rather than MS etc as there is posible rehabilitation. So really I am looking for advice to help me understand my symptoms and to better prepare me for what's ahead. I'm not going to write a big list of symptoms, just what I have no explanation for:

I have had left side weakness in my arm and leg which have been confirmed by neuro tests the doctor has performed. The stength has come back to my leg, allowing me to walk a bit better, however intense tingles still persist. I also get them between my legs (if you know what I mean) with some numbing. I have now noticed sensory changes when touching hot water. I feel heat more on my right side than my left. Are these normal for FND? I have had a tremor in my forefinger also, aswell as a noticeable tremor in both legs when I walk. I can't find much info to support this against FND and when I search I am always guided to MS.

Does anyone else experience these symptoms? Are they typical of FND?

Thanks for taking the time to read this.

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Nelmahi must be the day for this as after 17 years of being told i had MS i have now been told i may have FDN the new neroligist is looking at all my old scans etc ... but told to come and look at fdn web sight.. like you its all my left side thats affected hope you get answers soon

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Yes, those symptoms could all be caused by FND.

I am not sure why you think that MS would be a preferable diagnosis because there is 'the chance of rehab'. MS is a structural, degenerative brain condition that usually changes from being relapsing-remitting to progressive, and leads to increased physical disability as the main conduit for the nervous system degrades. It kills people.

It might be challenging to live with FND because so many doctors just don't know about it or understand it, and because treatment ideas are still in their infancy - but at least you are not on a degenerating pathway that may be fatal. Just be careful what you wish for - my brain scans revealed a non-operable brain aneurysm: it could blow any day and I could be left catastrophically disabled, if alive at all. Frankly against that discovery the FND was a picnic.

Tremor is quite a 'normal' FND symptom, in fact it is something that one of the UK's leading FND specialists, Prof Edwards, specialises in. And altered sensation is to be expected - as are altered auto-immune responses to any outward stimuli. Your brain is misfiring and sending misinformation. Anything can happen. But it is not suffering irreparable damage and so there is always the chance of it being fixed.

You may notice I said 'was a picnic' not 'is' above. That is because after 6 years of living with FND of gait, with a parallel diagnosis of ME, and severe symptoms that resulted in the loss of my career and my home, my symptoms started to improve about 2 years ago. I began to regain control of my legs and for the last 18 months have been able to walk again. The other symptoms are under control - I no longer suffer with extreme fatigue, brain fog, seizures, headaches, altered pain sensation, emotional lability, memory problems and cognitive dysfunction. In fact this last month I went back to work part time. Would that have happened if those symptoms had been as a result of MS? No - I would probably be needing a hoist to get me out of bed and a powered wheelchair to get around by now. Find out more about your condition, get signed up to see the best - and don't wish yourself into a much worse situation. No-one with MS would understand why you would want it as a diagnosis!

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The ladee said glad not MS not wish was. Yes all these are norm. I weelchare bownd hav a boy i not no i had but keep smile not giv up. Sorree not spel now

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Hi there, thank you for the time and reassurance. I used to work as a carer in a Neuro-disability care home looking after people with severe end stages of MS. I think you miss read what I said, as I have the same attitude as you. With FND there is the chance of recovery. MS is definitely not a diagnosis I want!!! I am new on this road of discovery and I appreciate your time. I too have problem with gait and have been unable to work and thought I would join this forum so I can better understand my symptoms. I take it you have experienced temperature sensory changes to water? It's good to know I'm not standing alone. Thanks again

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Hi nelmahi it's got to the stage with me where the tempretures can be so dangerous expecially the cold with me I had a operation at Christmas to have the entire inside of my mouth removed due to the constant seizures I have through the night I ain't getting the use of my left arm back it just kinda flaps allover, I have not been allowed to sit in a bath of hot water for about 5yrs now and constantly have just have supervised showers I have had some strange tests done privately and it's the cold that definitely seems to be hurting my condition the most I hope this helps I realy do I tend to keep my hands in warm water sometimes as this helps warm up the blood

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Thank you so much for your insight!! I seem to get more extreme tingling on my left hand and foot when I'm in hot water. I can't wear shoes as it because to much to bear! What do you do to overcome this? I had to sit with my feet in a bucket of cold water after i day in tje sun made my feet feek like they were on fire!!!! I am starting to feel i have a mountain to climb to get better, i have no patience and dont want to wait months for referals etc and want to know what is effective now so i can make a start at least. Thanks again, you have put my mind at ease as I've not found anything online that relates this to FND.

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Yes, I have sensory issues as well. Mine are more with cold than hot. Especially if I'm reaching for something in the freezer, or picking up a cold can that has been in the fridge. Those two are especially bad for some reason.

I'm currently in OT, trying to get a handle on all of this. My therapist said to try and relax the muscles around the area that is seized up. For me, I can relax my hand if I rest elbow on something.

Also, distraction works great. I can power through the temperature changes if I start laughing or get really mad (really mad works better for some reason, but I don't want to walk around as a pissed off person). Singing or humming work too. I hope this helps. I just started on this journey less than a month ago. It's all still really daunting.

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I just wrote a reply but it disappeared! I said that I have tried some distraction techniques which haven't helped as yet but I'll still keep going. I wondered about reflexes too.. I have abnormal on left side which isn't an FND sign. I got that info from the neurosymptoms website... do you have normal or abnormal reflexes? Like you I am newly diagnosed, or partially diagnosed as he made an emphasis on saying MIGHT before ordering tests to rule out demylination. Blood work is fine, CT is fine and now on nortryptaline and waiting for effect. I look forward to full diagnosis and the beginning of therapy to get back to normal! The fact that distraction works for you gives me drive to do this more. Thankyou! Stay strong!

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I have had these symptoms and have been diagnosed with ME/CFS and fibromyalgia, good luck

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I have FND, and yes, all of those things can happen. I got a lot of relief from hypnosis. While you wait for your tests see if you can find a hypnotherapist that specializes in movement disorders and pain. If this is FND, and you can trust the possibility of that, the hypnosis should help.

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