Mystery illness for 12 years. No doctors can figure it out.

It sounds like a possible autonomic disorder. Consider a university
or tertiary clinic neurologist. Go online and check out the Compass 31
screening test. Answer the questions and total your score.
If it in the teens or higher there could be a neurological cause.

Emmie,
Further to my comment yest. The Dr discovered the little girl had severe ear ache and had been give antibiotics. I think they were administered via her ears. Long story short she quickly became physcotic and totally unmanageable...screaming, yelling, head banging. Her frantic mother brought her to Dr Herman from another state abd he found the antibiotic had settled in ( i believe) in front lobe of her brain. He provide medication, within 24 hrs the child had returned to normal. I wonder if anything used during your root canal has affected your central nervous system.
My friend had a root canal, 3 wks later almost died from a brain bleed, traced back to the root canal.
I really hope you find this useful. I have had a ' mystery illness for 15 yrs and the root cause has probably just been identified. Huge relief, I hope this helps you. Gd luck!!

Welcome to the group,
Well that's a lot going on, I can send a prayer chain for you, will help by letting you know there's a lot of good groups here. I've had a few of your symptoms but I'm not a doctor either .. maybe other posts might point you a direction to start checking. Good luck

Are you too far away to go to the Mayo clinic?
Either location?
Your family doc should refer you to: disease specialist, gastro, etc.
for another opinion.

I've had a lot of the same issues, you're not alone. Ive been to nearly 100 doctors and still havent gotten an answer to what exactly was going on, had a bunch of MRI's and numerous other scans EEG's you name it. I cant go to big places like Walmart or a grocery store, sometimes I can make it a few minutes but those lights are just too much. One thing that does help is FL41 glasses. I cant watch tv sometimes, havent driven in months and before that only a mile or so. I did ride bmx and hit my head a lot, nonstop terrible headaches, basically just sitting inside trying to get through the day. Here is somethings that were found and helped. First I did find out I have cirrhosis even tho I dont drink, with that cirrhosis it made my spleen enlarge which dropped my blood platelets, it also has effects on the brain as the ammonia in my system wasnt getting flushed out. There is one other thing I found out, those issues also caused hepatic encephalopathy which can cause you to feel like a lucid drunk, I've had multiple times I asked someone something but what came out was nothing like what I was trying to get out. I usually just stay up at night when its dark and sleep as much l can through the light which is no way to live. I'm no doctor but I would recommend seeing a gastro doctor, make sure you are as normal bowel wise as you can get. It's frustrating, I definitely know, seem like we have a lot of similar issues. Hoping you can get some help soon.

My daughter has epilepsy. A lot of her symptoms are the same as yours. Her seizures do not look like seizures but they are. You might consider asking for an EEG.

wishing you all the luck in vinding your answers.

Your post caught my eye and I immediately thought of autonomic dysfunction, Sjögren’s syndrome and MCAS. These three tend to turn up together, I believe. Autonomic dysfunction can be precipitated by pregnancy (not sure about the others).

Dr Brent Goodman is one specialist I know of, but there are a few others out there. If you join a support group for any of these conditions on Facebook that covers your location, folks there will be able to recommend someone nearby.

Dysautonomia International hosts helpful autonomic support groups for each state/region in the US.

I’m sorry you’ve been unwell for so long. I had autonomic/autoimmune dysfunction for 15 years and ended up working out what was wrong myself – I managed to see an autonomic specialist who confirmed it.

Knowledge of these three conditions is patchy or non-existent amongst most doctors, I’m afraid. Best of luck.

Also, you might need a neuro-gastroenterologist to see whether the bowel problems are autonomic. The autonomic nervous system controls some aspects of digestion, so it’s possible. An autonomic specialist should be able to refer you.

Okay, I am not a doctor, but I'll take a crack at this.
So looking over your symptoms, what it sounds like to me is that it could be five things-

1.) Endometriosis- That can cause a whole range of symptoms from severe pain in legs or pelvic area like a numbing or tingling feeling in certain parts of the body.

2.) Chronic pain or nerve damage- You have severe or constant pain in certain parts of the body or there is nerve damage in a certain part of your body.

3.) Anemia- Being anemic or having low iron content in your body can cause you have headaches, or feel dizzy or feel tired or hungry.

4.) Auto-immune disorder or auto-immune disease- Some of the symptoms that you are describing is some of the symptoms of relating to either R.A., Lupus, Chron's or Ulcerative Colitis.

5.) allergic reaction to certain medications or medical procedure sedatives- If you are sensitive or allergic or to certain medications or certain procedure sedatives your body can react to it and have a mild or severe allergic reaction.

For me, I had a medical mystery and had strange symptoms, I went from doctor to doctor and felt helpless. I finally saw a specialist and I was finally correctly diagnosed. I would try to do some blood tests, to see if that can narrow down what you have. If I had to guess (Again, not a doctor) I would say your sensitive to certain medications, or possibly have an auto-immune disease or G.I. issue.

Hang in there and keep smiling! Don't give up, there must be a specialist doctor out there somewhere who knows about your mystery illness.