Third option: Finally I have an... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Third option

Ottaw
Ottaw

Finally I have an appointment with another neurologist and she said not all the symptoms are related to FND it's important for a neurologist to keep an open mind and look at other conditions, tests like blood work and urinary test. Some infections such as Lympe disease and syphilis - neuro syphilis could have the same symptoms. Hope these informations helps anyone.

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Best of luck to you, and your diagnosis. My FND ended up getting diagnosed as the results of 2 severe vitamin deficiencies and fibromyalgia. There was no FND. I really hope there is a light at the end of the tunnel for you as well.

Ottaw
Ottaw in reply to Justdrea81

I am so happy for you, I feel we need to take matters in our hands. The third neurologist told me it could be primary progress MS but still like to run more testing. Take care and have a wonderful day.

Oh my Gosh @ottaw I am looking for a second opinion, would you kindly tell me where you are based?

I don’t believe my issues are FND because to me Functional just means they have no idea what’s going on with you so let’s j ha t give it a fancy name.

Would you kindly tell me t he name of your neurologist if they are based in the UK so I can consider contacting them?

You could DM as I know it’s private information.

Thank you.

Love and light

Gentle flower 🌷

Ottaw
Ottaw in reply to GentleFlower

Absolutely, I am in Canada, you really need to be persistent, have them to check vitamin D, B12, urinary test and EMG not EEG, EEG is for seziour and epilepsy also to check for Lympe disease and syphilis. If I could help you in any way please let me know ☺️

GentleFlower
GentleFlower in reply to Ottaw

@ottaw hmm you are very lucky indeed. I’m in the UK. I have some vitamin D which I’m deficient, b12 was fine, no EMG, not sure about lympe disease & I think syphilis.

Thank you for letting me know.

In the UK there is a train of thought that FND is psychological. If anyone suggests FND to me I would run a mile.

Multiple debilitating ' mysterious' ' unexplained' symptoms were in my case discovered to be due to a genetic connective tissue disorder and accompanying autoimmune illnesses that were not detectable via blood tests. Best of luck

Hi @joanna36 how did they diagnose it if not blood tests?

Because I really don’t believe I have FND! I am very upset about this.

🌷💕🌸

Hi GF, I saw multiple doctors and fobbed off until I saw an EDS specialist whom confirmed ehlers danlos syndrome - this can come with so many weird neuro symptoms. Diagnosis was based on various typical symptoms. The main ai disease causing autonomic and small fibre nerve disease issues for me is sjogrens. It was only diagnosed by a lip biopsy. All my blood tests were negative

GentleFlower what are your symptoms?

Hi Jofachiz1, so if I am going right back from when my symptoms started it all started with seizures that the FND Dr’s label as Non epileptic. I had violent uncontrollable body movements, these are now more like tremors.

Then walking difficulties started, paralysis, motor weakness (limb weakness) breathing problems, loss of appetite that I became and still become very thin if I’m not careful. Especially when I experience nausea for weeks on end. When I lose weight my bones pet rude and it is painful to sit on a shower chair or the bed, my inner knees regardless of weight are excruciating if they touch, for as long as I can remember since this condition begun.

I’m only 5,4 (163cm) petite size 6-8 (USA 0 + ) so quite a small person anyway.

Then loss of concentration, focus, foggy brain, lost my speech at the beginning too like you. Stroke like symptoms frozen on one side at one point. Swollen tongue at one point I couldn’t get words out. At some point I was Non-responsive that I was a blue call with an ambulance at one point.

Light sensitivity that I sometimes, well used to wear glasses indoors. I now have glasses that change to dark in light.

Most importantly I struggle a lot with Chronic pain all over my body, joints, muscles, nerves too. I sometimes have swollen thighs, swollen muscles. Sore to the touch.

I’ve had anemia pop up last year. Catch UTI’s & infections easily and guess what, the Dr GP is adamant I would never catch Covid. Even though I had a respiratory infection in 2018. It’s madness. Mere colds send me bed ridden for weeks which is a reaction a lot worse than the average person with a cold/flu.

Hyper Sensitive skin that I scream with the pain just to remove clothes for bed or to put lotion on or even bathing. I have silk/satin bed and lounge wear for that reason. Some clothes too.

Chronic Fatigue is also my nemisis, I sometimes sleep back to back two weeks straight just going to brush my teeth or just a shower and eating light food or fruits. Or 16 hour sleeps or more. Still, at times this doesn’t feel enough but helps when I listen to what my body wants.

All these symptoms come in waves of cycles. Chronic pain and fatigue are always in the background then with all the other symptoms, they don’t all happen at once. It is only ever one more or two on top of the pain and fatigue.

I just never know what my day will bring in the morning or when I go to sleep. The condition fluctuates like the weather in England. It is extremely unpredictable in that the next cycle of symptoms could be very debilitating and sometimes they are not.

Sometimes I can walk sometimes I cannot.

Sometimes I am completely dizzy and off balance and seriously prone to a fall and other times I’m not.

Then suddenly I am okay for a month or two or at a stretch 3 with mild pain and fatigue but can actually get on with life, then suddenly I am sick again!

It almost seems like Multiple sclerosis the one where people go in remission and get bad again.

I know these are hallmarks of FND, but lest not forget, FDN (to me anyway) is a category consisting a broad spectrum of symptoms for those people the Dr’s have figured they cannot help because they have no idea what’s wrong with them. They, like me, are flung in there.

I could go all day listing the things I’ve experienced in the last almost 4 years of this horrid condition. I still believe if I could only find a Dr who is willing to actually do the job they spent years practicing for for humanity, then I will get to the bottom of it. But haven’t quite reached there yet.

I am little similar to you. I read your profile.

You are correct about misdiagnosis. I believe it’s happening everyday with FND patients because medical professionals can’t be bothered . Even if there are a few of those who want to help there just isn’t money put towards researching into why people are being categorised one this way like animals.

We are thrown straight to “psychiatrist consultants”

That’s who I am under. And I am furious but have gone with it. I am not mad as in insane and neither are any of us making these things up.

I’ve had boyfriends friends (all who are no longer in my life) mocking me about “faking it for attention”. But we all know behind every joke there is a seriousness. It’s a terrible condition to live with alone.

I am determined to get to the bottom of it. I look at the profiles and posts on here too like you it’s very sad and gets me emotional. But I figured I would be here doing a full time job trying to help people learn to live with the condition whilst they get the correct help from the correct professionals, like I am doing, not this FND nonsense.

I’m in my late 20’s this has robbed my life, a chance to have a family finding a partner who understands etc. Learning to cope and live with it till I get the answers.

Anyway those are my symptoms. Sorry for the novel, but it’s nice to let it out once in a while.

Love and light

GentleFlower

💕🌸

Ottaw
Ottaw in reply to GentleFlower

Did you had an EEG test? And EMG?

GentleFlower
GentleFlower in reply to Ottaw

EEG , but no EMG I don’t think so.

Ottaw
Ottaw in reply to GentleFlower

You need to have a EMG, nerve conductor test to check the nerves and muscles 💐

GentleFlower
GentleFlower in reply to Ottaw

Yes I will have to request that from my GP, thank you. I just assumed all that was simply done when I was in hospital for 3 weeks. I might actually have to request all the tests that have been done in the last 3-4 years to make sure of what’s been carried out.

Love and light 🤗🌸💕

Ottaw
Ottaw in reply to GentleFlower

Based on my experience you need to be your own advocate.💐💐

Dear GentleFlower.

Sorry it has taken me so long to reply. And thank you for your novel 😉. This is definitely the place to let it out. It can be completely bewildering to face so many different challenges particularly when doctors are not even trying to help or worse still think there is nothing wrong. I am sorry to hear of all that you are dealing with. And you are right. It is important to find a doctor who is willing to find out what is going on. But that can take a very long time.

I just saw a post today on a Facebook group from someone whose genetic testing showed they may have a Mitocondrial disease. I haven’t really heard much about it So I read up a little about that , which is yet another invisible illness, hard to diagnose, fluctuates, and causes all sorts of symptoms, including neurological, dysautonomia etc.

It made me realise that there are just sooo many different disorders and diseases that probably never really are addressed or investigated properly.

I think that regardless of what anyone is diagnosed with, a part of living with our various symptoms is managing them as much as we can and you sound like you are doing a good job listening to your body.

I can’t write a long reply. My brain does not feel like thinking too much today. Another flare up these last couple of days.

Take care till next time.

🌸

Dear Jofachiz1,

Thank you for reading my novel hahaha 😆 and for your reply. It was lovely to wake up to your response.

Well done you for writing as much as you could. I didn’t expect a long and detailed response back to be honest. I thought I had written way too much for anyone to ever read through it all. Your response was great to read. Thank you.

I am hardly on here but when I do jump on, I tend to like responding here and there just like you. And I always seems to have a lot to say and wanting to help others too etc.

Thank you for the encouraging words. You sound like such a lovely person and like you are doing great too. Keep up the good positive spirits, it’s helps on some days.

I just want to get better like everyone else on here does and get on with my life. I am trying to meditate daily and heal during this Covid period and do revision for my course exams in August 2020.

It’s working but I can feel the excruciating pain under my skin deep within my body, the severe fatigue, but I’m trying to keep going. Don’t know how long I can last for.

Sometimes it feels like it’s almost going and I’ve beat it, then I start doing things that make it worse when it hits me again. It never goes and I am not sure if this condition will ever disappear no matter how much you focus on positivity and mediation healing the mind and body etc.

Anyway, I had better go. I hope you are feeling good today and have somewhat a productive day as much as one can.

All the very best and maybe catch you soon again.

GentleFlower 💕🌸🤗

They are going on symptoms only , my gp does not agree , he said u need to know what has caused the fnd .....fancy name he reckons for something they cant diagnose

Ottaw
Ottaw in reply to 71standrews

So far 3 doctors have said, this is the new norm, they tell you FND like some kind of fashion designer label and off you go!!

71standrews
71standrews in reply to Ottaw

My gp exact words ....

Ottaw
Ottaw in reply to 71standrews

When it gets too complicated they don't want to explore other possibilities and then you have to become your own advocate which is frustrating.

Ottaw
Ottaw in reply to Joanna36

FND it's when nerves in your brain doesn't send or receive signals to the body, unfortunately when the condition becomes complex most neurologist without looking at other conditions label individuals with FND. I suggest make a diary as when you're symptoms started. Also EEG testing is for people had a epilepsy or seziour.

My original FND diagnosis turned out to be POTS, an autoimmune disorder and a genetic disorder causing paralysis and ataxia. Much better quality of life now that I am getting proper medication and not talk therapy. I encourage anyone who feels like there is something more going on to keep searching for answers.

The third neurologist thinks it's primary progress MS.

Just a quick question. I too am in Canada. Wondering how you have managed to see multiple neurologist without getting flagged in system as do not treat. Any pointers?

Ottaw
Ottaw in reply to Paddoodlz

I contacted Apple tree and asked for referral. Beside it's your health you have every right to see as many as doctors until you find a resolution.

Paddoodlz
Paddoodlz in reply to Ottaw

Hmmm I have seen drs on referral of family dr and have still been refused. What is Apple tree?

Ottaw
Ottaw in reply to Paddoodlz

Appletree Clinic. If you do a search you will find it.

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