Is it FND or RRMS: I strongly believe I... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Is it FND or RRMS

Ottaw profile image
7 Replies

I strongly believe I been misdiagnosed, when I review the symptoms doesn't mention anything about sensetivity to tempature or relapsed.

Here's couple of website I found useful:

Excemed.org and neurosymptoms.org

And medical need today which explains common misdiagnosed.

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Ottaw profile image
Ottaw
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7 Replies
Brokendeer profile image
Brokendeer

Hi this FND diagnosis you have been given is clearly distressing you and giving you great anxiety?

If you have not already, I would suggest you bypass any further General Neurologists and go get a 2nd opinion from an actual Specialist FND Neurologist who is very familiar with the condition. That way at least when they rule it definitely IN or OUT - you will feel you have been fully medically assessed ?

FYI - I am very sensitive to temperature shifts and Barometric Pressure and those people with Autonomic Nervous System problems- usually brought on by some physical/medical trauma.

Be kind to yourself, search for the calm in the storm!

Ottaw profile image
Ottaw in reply to Brokendeer

I have a appointment with a internal medicine today and where I am there are not alot of specialist in FND.

Brokendeer profile image
Brokendeer in reply to Ottaw

Hi I understand, it actually is incredibly difficult in the UK to find FND Specialist Neurologists as the only two centres are London or Edinburgh!

I hope you get definite answers very soon and can find the support you need to manage your daily life.

All the best in your quest for a true diagnosis,

Be kind to yourself, search for the calm in the storm!

Borrow profile image
Borrow

Hi,

I am very sensitive to temperature mostly cold, I go into deep freezes from my waist down- I have found lying in bed with an electric blanket helps to slowly warm me back up. I am also sensitive to damp weather both cold and humid- I’m much better than the weather men at saying when rain is coming, (My pain always increases).

I also have to be very careful in the sun- I burn easily?

Best wishes

angelina22 profile image
angelina22

Have you looked into Lyme Disease?

Ottaw profile image
Ottaw in reply to angelina22

No, I haven't.

GentleFlower profile image
GentleFlower

Hi Ottaw

I am extremely sensitive to the cold weather. I freeze completely and start struggling to walk or move.

When it is very cold outside, the door can be open for mere seconds and my body starts to lock down as if I am being Literally frozen by the ice queen.

My non epileptic seizures are then set off and I could be literally shaking for a very long time.

I do the same as one of our friends on here, I have a heating pad in my bed, two actually. One large one for the upper body as my hands and back can ache immensely sometimes without even being cold. Heat works well.

The other heating pad is a larger square for the legs and feet. My circulation is not great so this warms me up quickly as I fall asleep.

I try to have it on before bed time.

I enjoy sunbathing for vitamin D. I am the first out and the last one back in when the sun is out in my smallest bathing suit or naked, depending on where I am.

I too feel I have been misdiagnosed. Even though most of my symptoms do tick most of the symptoms on Neuro websites we are given when diagnosed, something in me strongly still feels this is not the right diagnosis. I will get to the bottom of it.

We each have something incredible in us... called... instinct. Follow that.

I will seek a second opinion when the time is right as any medical exploration is time consuming as I have learnt from FND.

It is also heavy on the health side of things. I have exams and of course the challenge of living with the condition mentally, emotionally and physically to deal on a daily basis, but after my exams I am on it.

You are not alone. I would say if you have the strength, you had better seek a second opinion elsewhere, you will be lucky to find a Dr dedicated to getting to the bottom of this weird condition if you are in the UK. I am considering going abroad.

Good luck,

Love & Lighy & Healing dent your way.

GentleFlower

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