Unknown illness

Posted by elfearsam @elfearsam, Feb 22 5:24pm

I never posted anything before like this, so I apologize if I am doing it wrong.
I believe this started in Fed 2024 after I was in a car accident. The car accident caused bruises, a neck problem, my four concussion, clear liquid something comes out of my nose, and an increase sensitivity to the heat I already had. I now also sometime wake up in a pool of sweat no matter the temp, what I'm wearing, or in front of an ac on full blast. After a while I was still left with clear liquid something comes out of my nose, the heat sensitivity, and night problem. I still have all of them today.
In April of 2024 I had a test to see if I had a csf leak and it come back negative. I did not know till last month the test was done wrong and would never have been accurate.
In Oct of 2024 I was told the tingling in my fingers, all of them, to my shoulder was carpal tunnel. It started that month. They order a nerve test which happens in Feb 2025. It should a little bit of it. When treated nothing happen. Got a second opinion and told me I don't have it.
In December 2024 two plastic egg crates fell on my head at work causing my five concussion and made the liquid that was already coming out worse.
Since then I have been in constant head pain. Not a headache or migraine. ( I already suffer from chronic migraines and get Botox for them before all this. The Botox did nothing to help this.) I could only stand for 30 mins before the pain increase in my head and now 20 mins if lucky. If on my period the pain would increase faster. My head pain increase when sitting also but not as fast. When I lay down my head hurts where ever the pillow touches.
In March of 2025 I got tingling in my toes to the top of my thigh. I was told I had a pitch nerve in my back. It was diagnosed with the wrong test and later proven wrong.
I was so angry with my doctor's office I went to a new one. My new doctor is trying her best. I had 4 neurologist last year. My newest neurologist started Dec 2025. I had seen all specialist there is and been tested for everything, all negative.
My thyroid problem that I stopped taking my meds for in 2024 is fine the two or three times they have check, which baffles me.
As of today I have tingling all over my body, in my ears, mouth, and more. It increase when I lay down but that all I can do most days.
I ask my neurologist to do a csf leak test because it's the only thing that fits all systems. I did a IR lumbar puncture for NM isotope was done and negative. I ask if she would still do a blood patch anyways and did. It happen on Fed 19 and still feel no different and I am afraid it didn't work. My period also started so I don't know if that hinders me seeing improvement.
I also have done research and know the blood patch has only a 85% chance of working because it's a blind one.
What does not help is I am a paranoid schizophrenic who does not take medications because all they do is increase my symptoms instead of decrease and I also have borderline personality disorder. Both hospital near me are horrible and I get treated like crap do to my past.
I even had to change my counseling office because they kicked me out and it wasn't even my fault so I had to go somewhere else.
I am looking if anyone has advice I am sick and tired of crying and going back and forth with thoughts that I've had my entire life so they don't ever really go away.

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elfearsam @elfearsam,

Wow! I am glad I am not a doctor. You have some big problems--makes mine seem small, thank you! I don't know where to begin, other than try to find a doctor who can act as a team leader to find out what is/are your problems. Keep searching for an understanding doctor. Should be at least one out there who can really help you!

May your search be successful!

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I'm so sorry that you are going through all of this! How awful for you! Plus it wasn't right for those medicial institutions to treat you bad and kick you out! Don't they realize that they are dealing with an ill person? Sometimes when we are hurting and ill we don't always act properly. Do you live anywhere near the Mayo Clinic? That would be a good place to start looking for some new doctors. Or a major clinic in your city or where ever you live.

The other place you can turn to is God. Just talk to him like he's your best friend and he is! You don't have to go to church to find God although church is nice. God made you and he can fix you. Tell him all your problems and concerns and ask for his help and you will get it. My husband died in 2024 and I have been very lonely. God has helped me immensely in dealing with the loneliness and other issues that confronted me now that I'm alone. I'll say a prayer for you also.
I wish you the best.
PML

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Just saw my PCP for AWV. For some reason he confided in me that he has a serious chronic illness. Try as he might, no one could diagnose the condition for so long, that he had to go to Mayo, where they finally figured out what it was.

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