Careful mentioning things to doctors. Because patients have access to a plethora of data and are “unqualified”, they will quickly file you into “hyperchondriac”, “psychosomatic”, and “needs therapy.” Sad, but true.
We have real, unmeasurable symptoms (or signs?) and because our CBC comes back normal, we get a clean bill of health.
When I spent some time looking at gene variants and saw the list of possible diseases, there were so many! And they all crossed different genes. Prions and all disease manifestations are usually a result of many different factors coming together at one time, and doctors don’t know the why yet. They just see, say, Prions, and have a lot of Alzheimer patients with them (for example, I don’t know) - and then the relationship is documented as APOE (Alzh) caused. Which could be wrong, but the association was made, and a precedence set.
Excess Glutamate is very uncomfortable! Tired and Wired. Buzzing skin and muscles is how I think I feel it.
Your issues are REAL.
AND - it takes a long time for the rare diseases that “fit the symptoms” to show up. Imaging can rule it out - if you stick to the symptoms when talking to doctors! They will go through a process of ruling out this and that. Save all your lab results.
They will either refer you, or tell you you’re depressed. They will never say “I don’t know - but let’s keep digging!” Oh those would be magic words!
You have time. I know what it’s like to “lose my mind” and watch it happening, and having ZERO support. It’s scary! In that sense, it can enhance your symptoms depending. Getting no support for something very real in your experience, I believe, exasperates the problem. It is the “worry and stress” you may be labeled with, which didn’t exist until “professionals and experts” dismiss your experience.
If you can, try for a Functional or Integration doctor. They know something like h.pylori can lead to gut issues that cause neurotransmitter problems.
Try to remain calm, doctors do NOT understand jokes! Not on the job at least. (I read this in my disability appeal documentation). Also, doctors don’t remember everything and elaborate. So don’t bring up personal information about your life, job, family, etc. Just stick to the symptoms and ask what they think might be causing them? Defer to their “wisdom” even if you know differently. Sometimes they have to come to the conclusion themselves, but if told, will shut down completely to the idea.
And don’t mention any diseases!!! Symptoms only! Dry facts. Try not to emote either (how pathetic is that!) Do your research, but don’t share it. Medicine is actually super complicated and doctors do know a lot - they just get stuck in ruts.
Learn from my mistakes! (although I was right! It WAS mold in my case!)
I empathize with your symptoms and situation. You see a marked change. Doctors watch trends and when a change occurs, that indicates something is awry. But they seem to forget that with these ‘nebulous’ symptoms, especially when they don’t have a long term relationship with you (and if you’ve been healthy, why would they!)
I echo that doctors don’t know anything about genetics. They are general practitioners. Geneticists can tell you all your scary potential diseases that may never express. Many labs are catering to gene testing, and SNP groupings, not just one gene, are finally being recognized as more important than one gene. The labs give pretty print-outs and offer interpretation support for the doctors - so things are coming a long way.
My hope go out to you and finding the right doc!