Weird, undiagnosed neurologic condition

[thickiana]

Does anyone else here have bizarre & undiagnosed symptoms that make you want to CTB?

My personal hell started in last April when I started having a load of odd shit including muscle spasms on the left side of my body (from head to toe), electric-like headaches combined with loss of vision, inability to breathe normally because my neck muscles are twitching & blocking the airways, full body cramps, etc... My whole left side also seems to go numb once in a while.

Long story short, I have been examined by various doctors and I spent a while in a neurological hospital but the tests didn't show anything that could explain my condition 100%. There have been signs of different diseases but none of my symptoms seem to match any diagnosis out there. During this process my mental health has been questioned so many times I've lost count.

Sorry for the bad English! I wanted to write a longer opening for this thread but my brain doesn't function very well.

 

[so tired or manic]

I was watching a documentary series on Netflix, Diagnosis, about a reporter doctor lady who used the internet to find diagnosis for people. asking the world their thoughts or if they've experienced similar. might be worth looking into. https://www.netflix.com/title/80201543?preventIntent=true

 

[SummerDreamer]

I'm so sorry to hear you're going through this, all those symptoms sound scary and awful! The worst is when they can't give you a diagnosis or why you developed such symptoms. You say that the tests didn't show anything to 100% explain things, and that there were signs of different diseases, so was there evidence on brain scans of anything abnormal? Just because your symptoms don't match a certain diagnosis, doesn't mean you don't have a certain condition. They might vary greatly for different people. I too have neurological symptoms (tinnitus, visual snow and hyperacusis), there are other people I've found online with similar symptoms and there is no cure. I can completely understand how you feel about doctors unable to give you a diagnosis, it's so frustrating . I hope you find some sort of answers soon <3

 

[Esc9434]

@thickiana You took my advice and made a thread! Hope you get the answers you are looking for!

 

[Red87]

My husband had problems like that constantly having head achs numbness in his hands pressure behind his eyes they didn't know what it was either did u have a head scan u could have neuropathy

 

[DeadButDreaming]

Yes, I do. It's extremely upsetting to know that psychiatrists are as ignorant as the layman when it comes to our illnesses because they aren't in one of the hundreds of books they've read in their 12 year university educations.

 

[Red]

I'm looking into vasculitis for similar problems that have spammed years - chronic inflammation of blood vessels seems to fit for me, dunno if it might for you?
Trying to get docs to listen but is hard going

 

[s3gfault]

Yes I have had symptoms for years that nothing has been able to fix

 

[thickiana]

Thank you guys so far I have showed symptoms of dystonia and MS, but there's also a wide range of other stuff that doctors have been unable to explain.

@Red87 @SummerDreamer yes I had an MRI two months ago and there was one white matter lesion but it shouldn't be anything serious. I'm supposed to have a new scan in November, but I honestly don't know if I'll be able to stick around that long :/

@Red thanks! I've heard about it but it never crossed my mind. What kind of symptoms do you have?

 

[Elbarado]

Thank you guys so far I have showed symptoms of dystonia and MS, but there's also a wide range of other stuff that doctors have been unable to explain.

@Red87 @SummerDreamer yes I had an MRI two months ago and there was one white matter lesion but it shouldn't be anything serious. I'm supposed to have a new scan in November, but I honestly don't know if I'll be able to stick around that long :/

@Red thanks! I've heard about it but it never crossed my mind. What kind of symptoms do you have?

did you have a

lumbar puncture ? with MRI and

lumbar puncture it should be easy to say if its MS or sth else

 

[Red]

Thank you guys so far I have showed symptoms of dystonia and MS, but there's also a wide range of other stuff that doctors have been unable to explain.

@Red87 @SummerDreamer yes I had an MRI two months ago and there was one white matter lesion but it shouldn't be anything serious. I'm supposed to have a new scan in November, but I honestly don't know if I'll be able to stick around that long :/

@Red thanks! I've heard about it but it never crossed my mind. What kind of symptoms do you have?

Whole host of symptoms, from joint pain to constitutional symptoms to neurological... 4 years so far and not pinned it down! I have more ideas about what it might be than the actual doctors, it'd be nice to find a doc who actually gave a monkeys lol
I really hope you find answers and/or feel better soon

 

[BitterlyAlive]

I wonder if any of the professionals has considered that you may have a conversion disorder? That was my first (very uneducated) thought.