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Do anybody get seizures or type of movement disorder from me/cfs?

Charts profile image
9 Replies

Just wondering as I'm not diagnosed with cfs but my symptoms point to it.I've been getting constant sore throats from over doing it (that's just getting dressed) then if I push myself even more I get a seizure or what looks like a movement disorder (like chorea or something similar). Nobody has ever got to the bottom of this.

Im just struggling to function with the basics

Ive been diagnosed with pots syndrome, Hughes syndrome, but none of these seem to tick the symptoms of sore throats and seizures

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Charts profile image
Charts
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9 Replies
klr31 profile image
klr31

Have you ever had your thyroid checked?

Karen

Charts profile image
Charts in reply toklr31

HiYes I've had all the basic blood test done including thyroid

klr31 profile image
klr31 in reply toCharts

Hope you checked your results/actual numbers?

Karen

Charts profile image
Charts in reply toklr31

I don't think I did actually check myself

klr31 profile image
klr31 in reply toCharts

You are entitled to your actual results with reference ranges.

Charts profile image
Charts in reply toklr31

I have requested previous ones and yeah they don't always tell you when things are out

Hi,I can only speak from my own experience and obviously, we're all individual (also worth noting that nobody here is medically qualified).

It's always been my understanding that sore throats/flu-like symptoms are a common occurrence with M.E/CFS.

Unfortunately, I have no experience with seizures, personally.

A neurologist may be able to shed more light, assuming you haven't already seen one, regarding this issue.

If you have any further questions, I'm happy to try to help :)

Charts profile image
Charts in reply toButterflyPrincess1

Originally my seizures were diagnosed as fnd. But that was an epilepsy nurse that planted the seed in the neurologist head and the neurologist looked no further. Since then I was diagnosed with pots and Hughes syndrome The epilepsy blamed all my symptoms on fnd. This fnd diagnosis has essentially given me a black mark like no one will look past it

ButterflyPrincess1 profile image
ButterflyPrincess1 in reply toCharts

I completely understand your frustration, regarding the FND (Functional Neurological Disorder, to those who might not know) diagnosis and the subsequent issues you've had.As I said above, I have no experience of seizures, personally.

I've seen a few Neurologists, due to chronic migraines. I also have an ongoing issue with a tremor.

Sadly, you might find that a CFS diagnosis also means you're treated less favourably because it's widely regarded as a 'dustbin diagnosis'; with no proven treatments and of course, no cure.

In my own experience, we sufferers are given the diagnosis and sent off to find our own way to live with it.

Not what you're looking for?

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