Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.]

Reply
 
Thread Tools Display Modes
Old 02-29-2020, 11:07 AM #11
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Default

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

Sent from my SM-G903F using Tapatalk
Horselover7216 is offline   Reply With QuoteReply With Quote
Old 02-29-2020, 11:39 AM #12
Chemar's Avatar
Chemar Chemar is offline
Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,155
10 yr Member
Chemar Chemar is offline
Administrator
Community Support Team
Chemar's Avatar
 
Join Date: Aug 2006
Posts: 27,155
10 yr Member
Default

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.
__________________
~Chemar~


*
.


*
.


These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
Chemar is offline   Reply With QuoteReply With Quote
Old 02-29-2020, 11:41 AM #13
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Default

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

Sent from my SM-G903F using Tapatalk
Horselover7216 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Chemar (02-29-2020)
Old 02-29-2020, 12:44 PM #14
LettingMyLightShine LettingMyLightShine is offline
Junior Member
 
Join Date: Dec 2017
Posts: 12
2 yr Member
LettingMyLightShine LettingMyLightShine is offline
Junior Member
 
Join Date: Dec 2017
Posts: 12
2 yr Member
Default

Quote:
Originally Posted by Horselover7216 View Post
Whats a CSF leak?

I've had too normal MRI scans... :|

Thanks for believing me that it's brain related!



Sent from my SM-G903F using Tapatalk


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.


Sent from my iPhone using Tapatalk
LettingMyLightShine is offline   Reply With QuoteReply With Quote
Old 02-29-2020, 01:01 PM #15
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Default

Okay. I will look at it

Sent from my SM-G903F using Tapatalk
Horselover7216 is offline   Reply With QuoteReply With Quote
Old 02-29-2020, 04:37 PM #16
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Default

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

Sent from my SM-G903F using Tapatalk
Horselover7216 is offline   Reply With QuoteReply With Quote
Old 03-01-2020, 06:18 AM #17
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Default

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

Sent from my SM-G903F using Tapatalk
Horselover7216 is offline   Reply With QuoteReply With Quote
Old 03-16-2020, 06:07 PM #18
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Default

Quote:
Originally Posted by LettingMyLightShine View Post
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.


Sent from my iPhone using Tapatalk
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 [emoji42][emoji42]

Sent from my SM-G903F using Tapatalk
Horselover7216 is offline   Reply With QuoteReply With Quote
Old 03-16-2020, 07:47 PM #19
agate's Avatar
agate agate is offline
Member
 
Join Date: Aug 2006
Location: Wild West
Posts: 593
10 yr Member
agate agate is offline
Member
agate's Avatar
 
Join Date: Aug 2006
Location: Wild West
Posts: 593
My Mood: Mystery illness. Bed bound and loosing hope
10 yr Member
Default

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:

Quote:
I'm on paracetamol, oramorth (morphine sulthate) dihydrocodeine, ibuprofen, buscopan, amatriptaline, peppermint oil, deloxatine, quatiapine, omeprazole, cefalexine (my profalactic antibiotic), cyclazine, ondansatron, zopiclone, my anti histomeine, movicol, scenna, docisate sodium and suppositories.
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.
__________________
Repeal the law of gravity!

MS diagnosed 1980.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10.
agate is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Wren (03-16-2020)
Old 03-17-2020, 08:25 AM #20
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Horselover7216 Horselover7216 is offline
Junior Member
 
Join Date: Feb 2020
Posts: 14
Default

Quote:
Originally Posted by agate View Post
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..

Sent from my SM-G903F using Tapatalk
Horselover7216 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
agate (03-17-2020)
Reply

Tags
january, test, time, told, worse

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Loosing hope, functionality and patience..please help littletsunshine General Health Conditions & Rare Disorders 5 07-09-2009 10:56 AM
'Keep going' - Scarborough man won't quit fight against mystery illness BobbyB ALS News & Research 0 05-04-2007 07:44 AM
Mystery illness is just one fight for woman BobbyB ALS News & Research 0 08-28-2006 06:59 AM


All times are GMT -5. The time now is 10:09 PM.

Powered by vBulletin • Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.