Undiagnosed Symptoms 23 yo Male

[bucky53]

Hello All,

I have been suffering undiagnosed symptoms for 2 years. I am a normal 23 year old male who was in good, normal health until these symptoms began. The symptoms had a rabid onset and have not truly progressed (as far as I am aware).

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The symptoms are as follows:

-extreme muscle pain in whole body

-tingling/electricity feeling down knee into feet and in lower spine

-pulsating/throbbing/vibrating/rumbling/knocking throughout body

-Occasional tremors

-Nausea/lack of appetite

-Feels as if my head/neck/spine are bouncing back and forth, like a rubber band reverberating

-Fatigue/ Tired
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I am not degenerative. I have not lost strength. These symptoms come and go and at times are mild, while other times they are unbearable, leaving me unable to function.

I have had many tests and all are normal. They are as follows: extensive blood work, echocardiogram, lumbar puncture, emg, mri head/neck/spine, colonoscopy, endoscopy.

I am not nor have not ever been a depressed or anxious person, but I am really struggling physically daily and have grown weary.

I do not have MS, Lyme, ALS to anyone's knowledge.

I have taken a few rounds of doxycycline in the off chance that I had lyme.

I continually have trouble describing my symptoms and I believe this has hindered my doctors.

Any advice into which direction I should pursue and which specialists I should see would be welcome.

Any shared experiences would be welcome.

I am currently at clinic of a major research hospital. Any suggestions in navigating this space?

I believe a true tangible diagnoses is approaching. I believe what is hindering me will inevitably be simple and obvious and I will recover close to 100%. I just need better direction.

Cheers!

[LowCortisol]

Two things come to mind:

1. You are not seeing the right TYPE of physicians OR
2. The ones you see are not experienced in diagnosing rare conditions.

I suggest you see a highly experienced neurologist, ideally old and working in a major hospital and show him/her your scans and narrate your history.

Also see a highly experienced endocrinologist, ideally past middle age and working in a major hospital and show him/her your blood work and narrate  your history.

Such experts should solve your health problem.

[TheLightSeeker]

Hi bucky53.

"It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so." - Mark Twain

I like this quote. It has a lot of application in life.
It might even apply here.
For example you don't have Lymes, right. Your doctors have ruled it out Lymes and even taken a few rounds of doxy in order to eliminate any doubt.
And this could get you in trouble.
Please be patient and follow my train of thought.
What if I told you that a Chronic Lyme's Infection is most likely not ruled out, for one simple reason.
Chronic Lyme's is NOT recognized by the Infectious Disease Society of America (IDSA) and Doctors follow the protocol suggested by IDSA and CDC for diagnosis and treatment. I must point out that CDC s position on Lymes (that is only an acute infection, which goes away with a month treatment with antibiotics????) has more to do with epidemiological studies , than dx and tx.

There are many holes and gaps in the medical system, from flawed testing
with false negatives and positives,  to intentional ignorance & disturbing
internal  politics.
Can you be more specific with your labs and other test results, but please include units of measure and lab reference values ( normal ranges).
Did you get MTHFR gene mutations ruled out?
How about Candida, Vitamin D deficiency and other deficiencies, Hypothyroidism?

Cheers,
Niko