I am a medical mystery

Sounds like you need a good primary doctor or neurologist-diagnostician

I’ve already seen a neurologist and they said nothing is wrong. I wish I could find a good diagnostician.

If at all possible could you go to a Mayo Clinic or like hospital? You seem to need experts,

This may sound strange, but try a strict carnivore diet.

I highly recommend Mayo to help you sort out the mystery. I was sent to 2 different ERs and told I had something completely not correct. Thankfully, I was able to get to Mayo in Florida. They will take the time to listen, test, and diagnose. It really is so frustrating when you do not feel well, and you can't seem to get a correct diagnosis.

I tried Mayo and they would not accept me.

@historymom1988
Greetings and welcome to Mayo Clinic Connect.
Whew! You have received a tremendous amount of information, but not the one piece that you really need which is a diagnosis. I’m so sorry. Our members have a wealth of experience, but we’re not doctors and can’t possibly interpret your medical reports or history. They are quite right in suggesting that what you need is a good, thorough, multidisciplinary workup.
Are you receiving services through a teaching hospital or larger medical facility where clinicians from various specialty areas are accessible easily?
You seem very organized and it’s good that you’re keeping track of all of these reports. Electronic medical records help a lot but I like to keep my own notes and check my own lab trajectories. If your “handle” betrays your vocation, I know you’ll stay on top of that.
The down side is that this diagnostic journey you are on is, like history, not linear. It’s complicated and sometimes it takes some time to figure out what, if anything, is wrong and how to fix it.
Anxiety is natural but not your friend. Try to keep in mind that modern medicine is awesome and you’re an excellent documentarian. They will figure this out.
Will you let me know how your testing comes out and how you are fairing?

I am so sorry you’re going through this with. I have been on a similar journey for the past ten years, but I am finally getting some answers. What a difference that makes! Here are some things I’ve learned so far that might be helpful to you.
1. Don’t listen to doctors who tell you nothing is wrong. Something(s) is causing what you are experiencing, given your symptoms and test results. You just haven’t found the answers yet.
2. Neurologists specialize, I’ve seen a neurosurgical NP, an MS neurologist, a vascular neurologist, and a movement disorder neurologist. The first three couldn’t identify what was causing my symptoms. The last one did a skin punch biopsy and ruled out PD, but the test showed low intraepidermal nerve fiber levels, indicating small fiber neuropathy. I have an appointment in April at Johns Hopkins at one of their neurology specialty centers. They reviews my medical records and assigned me to a specialist in Myasthenia Gravis and in genetic neurological disorders (turns out my niece has Ehlers-Danlos syndrome and POTS). The doctor has published a ton of research in these areas, most of which is way over my head, but he saw something in my records that resonated, so I’m eager to hear what he says.
3. Diagnosing autoimmune disorders is very difficult. I was told, with great certainty, by a rheumatologist that I don’t have an autoimmune disorder, despite certain test results. The small fiber density results, along with other tests and my symptoms suggest that it’s still a possibility. Given your RA factor alone, it seems as if further tests/clinical review would be helpful.
4. It’s hard to push back when you’re told that doctors are finding “nothing wrong,” especially when you’re in pain and fatigued. But sometimes it’s the only way to get the right help. Most doctors don’t like to hear that I do research, but I know enough to look at medical websites and teaching videos from places like Mayo, Hopkins, Cleveland, MassGeneral to learn enough to figure out what kind of specialist I should be seeing. Dr referrals can be helpful too, although I’ve found that most PCPs and even many specialist don’t know where to send patients with SO many symptoms. I’ve felt for sometime that my symptoms were part of larger problem, and it turns out that that’s likely. Going to too many different doctors (cardiologist, pulmonologist, allergist, orthopedist, opthomologist, pain specialist, etc.) has resulted in conflicting diagnoses and remedies. One doctor put in his notes that I have a “constellation of symptoms.” What I’ve been looking for is someone who can see the big picture of what the stars in that constellation represent.

I hope this LONG response helps you in some way. You’re not alone on this journey. That thought has sustained me through some dark days of frustration and self-questioning. Sending support and wishes for some answers soon.

So very sorry to hear what you are going through. I went through something similar. Suffered all the time. One smart Neurologist, when I was age 50, decided to do genetic testing. I was diagnosed with a very rare neurological disease - Hereditary Nerve Pressure Palsy.
Then things started happening again, and of course the doctors told me there was nothing wrong with me. So finally, when I went for my wellness check up the PA looked at my blood work and told me there is something wrong. She sent me to an Infectious Disease Doctor and I found out I had CLL/SLL.
It didn't stop there. Started getting terrible symptoms of sweating, nausea, vomiting, frequent urination, and would pass out. Well, of course the doctors said there was nothing wrong, but to my persistence finally found out it was the Vagus Nerve causing all these symptoms. I know how to stimulate the vagus nerve and now I'm feeling much better, even with the Neurological issue. You have to be persistent, do your research and don't give up, especially when the doctors don't have answers. There are answers out there, but the doctors will not go outside the box. My suggestion would be start with the Infectious Disease Doctor. There is so much they could find out and point you in the right direction. Good luck and don't give up!