No they haven't. My mum is asking my neurologist on Wednesday. I'm so nervous!!

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Don't be nervous! It's better to know and then be able to treat in the most effective way.
Do show your mom that link I posted for you.
I have many more resources for PANS/Pandas if needed.

Im nervous coz of the already FND diagnosis. And i will.
I've also seen the documentary my kids not crazy. Will show her that too

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Recovery for Mandii’s dad – a spinal CSF leak story | Spinal CSF Leak Foundation

Read this story! There’s lots of others too! This website has more resources in CSF leaks. MRI is normal in 80% of the patients.


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Okay. I will look at it

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It looks like my symptoms, but what about the psychiatric symptoms...

I'm bed bound and desperately trying to find out what's wrong. I have ehlers danlos syndrome (eds) and i have had severe back and head pain for years. I'm constantly having to turn over due to back pain. Also my neck got locked in one position and has been stiff ever since. Often i find that my back wants to lay one way and my neck wants me to lay the other. I also have had severe sickness and have had to be taking anti sickness ever since i got d&v. Ive hit my head several times and have had concussion. I have audit and visual hallucinations and eye sight issues. Dizziness. I have had stuff run down my throat causingvit to feel blocked for years. Sudden behavioral issues/ changes. I now can't even sit up or keep my neck up straight. Now i can't sit up without lower back pain and sickness. Agitation. Numbness in hands and legs. Can't feel pain. Sensitive to light. Memory issues. Panic attacks. Can't feel emotions, yet with a flick of a switch, I'm angry or crying. I have no idea why after. Aggression. Anorexia. Depression. Autism. Virtigo. Brain saps. Not responding to pain meds and i can't have morphine as that doesn't work and makes me sick. Nothing works. Normal mri and blood tests testing for antibodies. Frequent infections. Resistant to most antibiotics now. Also i have constant ringing in my ears. Also I've had a really bad ear infection, where i lost my taste buds and sense of smell. I've lost my taste buds now and sense of smell.
My neurologist has diagnosed me with FND but i disagree!
I'm aware that not all my symptoms are relivent, but i thought I'd add everything

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I wrote this

Could i have this? I'm bed bound and desperately trying to find out what's wrong. I have ehlers danlos syndrome (eds) and i have had severe back and head pain for years. I'm constantly having to turn over due to back pain. Also my neck got locked in one position and has been stiff ever since. Often i find that my back wants to lay one way and my neck wants me to lay the other. I also have had severe sickness and have had to be taking anti sickness ever since i got d&v. Ive hit my head several times and have had concussion. I have audit and visual hallucinations and eye sight issues. Dizziness. I have had stuff run down my throat causingvit to feel blocked for years. Sudden behavioral issues/ changes. I now can't even sit up or keep my neck up straight. Now i can't sit up without lower back pain and sickness. Agitation. Numbness in hands and legs. Can't feel pain. Sensitive to light. Memory issues. Panic attacks. Can't feel emotions, yet with a flick of a switch, I'm angry or crying. I have no idea why after. Aggression. Anorexia. Depression. Autism. Virtigo. Brain saps. Not responding to pain meds and i can't have morphine as that doesn't work and makes me sick. Nothing works. Normal mri and blood tests testing for antibodies. Frequent infections. Resistant to most antibiotics now. Also i have constant ringing in my ears. Also I've had a really bad ear infection, where i lost my taste buds and sense of smell. I've lost my taste buds now and sense of smell.
Also, i had urinary problems growing up and found that as soon as i laughed or bounced on my trampoline, I'd end up going. It was very embarrassing and i had to take this little blue tablet to help (can't remember what it was called)
My neurologist has diagnosed me with FND but i disagree!
I'm aware that not all my symptoms are relivent, but i thought I'd add everything

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Hi. So my neurologist unfortunately diagnosed me with FND but i disagree and think its PANS/PANDAS. Keep having random panic attacks and dull aches and im extremely exhausted

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Hi Megan,

I'm not very knowledgeable about autoimmune diseases. I have had MS since the late 1970s and try to keep up with developments in that field. It isn't known for certain that MS is an autoimmune disorder.

Anyway it sounds as if you're suffering considerably and I hope that the doctors who are treating you will find some answers that will be helpful soon.

I'm struck by the list of medicines you're taking:

That's a fairly long list. I hope that your doctors have been looking closely at each of them to check for possible adverse effects and drug interactions. Quite often seemingly unexplainable symptoms turn out to be caused by a drug the person is taking--or by a combination of drugs that has triggered a problem.

Im not on oramorth, dihydrocodeine or zopiclone now. Im taking ibuprofen and melatonin instead..

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