mrsfoz19705 years ago

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

malalatete5 years ago

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!

SuCouling in reply to malalatete5 years ago

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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Nelmahi in reply to malalatete5 years ago

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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Junebeatle in reply to malalatete5 years ago

May I ask what treatments, dietary changes, etc lead to your improvement? I’ve had the worst flare ever after back to back viruses in 1 week and can’t seem to recover. Which I need to for our kids & finances! Please help out on your steps to recovery. I was in remission for 19 months

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malalatete in reply to Junebeatle5 years ago

I can't really say that I have nailed this - I can only describe where I am. As to how I got here, that is difficult to pinpoint. In Feb 2015 my aneurysm was diagnosed. Like I say that put the ME/FND into perspective. At the time I was walking v little, very quickly fatigued, using a mobility scooter or wheelchair for long days. My main problem was my robotic gait, which thoroughly exhausted me. Knock on impacts were into cognitive function, memory, speech, emotions, spatial awareness, tolerance on all sorts of levels...

I knew I would need some kind of brain surgery, and that as it was elective the wait would be considerable. I knew I needed to be in the best condition possible to cope. So I pulled out of everything I was doing -the village newsletter, a childrens choir, helping at church. Then we moved and my travelling (to school with my children) was also reduced. Come July 2016 and my op, and life was very lite indeed. I haf begun to feel better as a result. And though the recovery was tough (I definitely reacted badly to the anaesthetic) eventually after about 4 weeks in bed I began to get up.

This was the biggest and most sustained period of rest I had had since he first few months of being ill. I took all the pressures away. Emotionally (and I can't underestimate the importance of letting go of the emotional burdens of 'should' and 'ought') I had to prepare to die on the table on 9th July 2016. I wrote my will, my funeral plan, letters for my 2 boys for their weddings and the birth of their first child. I let it all go. This is it. I am what I am, and there is no bigging it up. It is just me.

I handed myself over (for me, this was to God's care). I stopped trying to control the situation. And when I came out, things were better. Not straight away, because I was so very weak and unfit. But bit by bit my stamina has returned. I am working on fitness at the moment - but still 2 years later, even a few days of consistently meeting my 10000 step target and I can begin to feel everything saying 'Whoah!!!' So it is a long, hard road to recovery. I balance like mad - day on, day off, catch a rest here, there during the day - or face the penalties of brick walls of fatigue and headache.

Not cured, just better - managing better. I honestly think it could all go pear shaped at any time. I have a weakness- a bit like my husband's weakness for pneumonia. I don't have the option of a jab thouh, so I just watch like a hawk, and treat myself well. After all, there's no way I want to go back, if I can help it...

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ViktoriaC in reply to malalatete4 years ago

A wee apology to Nelmahi wouldn’t be out of the question here Malalatete. It’s a common theme on this forum wherein people fail to read posts correctly and jump on the nearest high horse. Doesn’t make for a very welcoming platform and certainly coloured my opinion of this forum when I first came to it with no where else to turn and quickly became the last place I would seek support. The only reason I come here now is if I spot a post I have experience of and can maybe give constructive advice to a fellow human in suffering. Just saying...

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malalatete in reply to ViktoriaC4 years ago

First that conversation is over a year old. Second it was indeed a conversation - if you read all the posts you will see there were responses on both sides. I made it quite clear several times in my posts that I was only recounting my experience and my feelings on the situation. Sorry, but I see only one person saddling up here....and it isn't me!

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ViktoriaC in reply to malalatete4 years ago

I did read the full conversation. It appeared in my email notifications as a new thread so for that (and on behalf of healthunlocked.com) I apologise as I have the good grace to do so. Meanwhile you’re obviously still keeping your saddle well oiled 👍 Jeez 🤦‍♀️

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Mat085 years ago

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

Nelmahi5 years ago

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.

Justdrea815 years ago

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.

Nelmahi in reply to Justdrea815 years ago

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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Paula16775 years ago

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

Gud4Ewe5 years ago

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.