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Unknown neurological cause (help)
21 year old male have been bedridden with neurological issues with unknown cause. No triggers or change that I can think of. Came fast out of nowhere and now just my new normal
Got severe head pressure and head burning along with vision issues (halos, starbursts, everything looking too bright)
Severe brain fog and dissociation. Brain completely blank like brain dead
All of these are 24/7 for 18 months straight no break
Normal Brain CT
Normal CTA
Normal MRI
Normal EEG
Normal Bloodwork
B12, CRP, CBC, Chem 9, a1c, Lyte, creatinine, ALT
Normal TSH and PTH
Serology-Lyme IgG/IgM NEGATIVE
Normal ANA,ENA and Thyroid Antibodies
Negative EBV panel
Normal Urinalysis
Urine Drug All Negative
Urine heavy metals 24hr all normal
Autoimmune encephalitis/Paraneoplastic Blood+ CSF Negative
Doxycycline for 3 weeks did not help.
migraine meds didn’t help. Corticosteroids provided some temporary relief (not sure why)
I don’t have positional changes either.
Lumbar Puncture Results ( all normal with slightly high protein so far)
Lumbar Puncture Results
Opening Pressure 16
Leukocytes; CSF < 3x10\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\*6/L
Erythrocytes: CSF < 2000 x10\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\*6/L
Neutrophils Segmented/100 Leukocytes; CSF 0.06
Lymphocytes/100 Leukocytes; CSF 0.78
Monocytes/100 Leukocytes; CSF 0.16
Glucose; CSF 3.7
Protein; CSF 0.59
Xanthochromia; CSF Absent
CSF; Culture No organisms or growth seen
IgG; CSF 0.023
Albumin; CSF 0.361
IgG Index; Serum+CSF 0.52
IgG Synthesis Rate; Serum +CSF < 0.10 mg/24h
Oligoclonal Bands; CSF Absent
Any suggestions on what I should I do next. Completely out of Ideas
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It’s just a shot in the dark, but I had some of those symptoms before I had surgery for thoracic outlet syndrome. Of course, doctors don’t tend to believe me when I tell them that it helped a lot with my brain fog and other neurological issues. Then again, I was a perfect candidate for TOS because I had been playing baseball every spring, summer, and fall for 50 years. Unfortunately, some of the brain fog came back when I started playing baseball again about 3 months after the surgery, but it’s still better than before. Good luck, I know how you feel when you know something is really off and every doctor tells you that all your test are normal. Just wait until they start telling you it’s psychological. I’m gen X so that really tends to piss off our generation.
Oh, I am so sorry you're going through this. That level of constant brain fog and dissociation sounds absolutely debilitating. I had a period of really bad fog too, not 18 months thankfully, but awful. I ended up running my labs through elenixia and it actually flagged a couple of things my doctor had overlooke, which helped me figure out a direction. Wishing you all the best in finding answers.
Any significant change in your work, leisure, or housing environment during this timeframe?
Regards,
Sagan
@saganjames no trigger or change at all. Came out of nowhere
Something has built-up or changed, subtly perhaps. Anything you might be inhaling or did inhale over a period of time, for example flooring adhesives? Vacination side effects? Keep at it, everything has a cause.
Regards,
Sagan
@condorbirdy - The American Brain Foundation has some information on brain fog and possible causes that might be helpful to scan through - https://www.americanbrainfoundation.org/what-is-brain-fog/. Also the National Headache Foundation has some information on a condition that shares some of the symptoms you mentioned - Idiopathic Intracranial Hypertension (IIH): High-Pressure Headache:
https://headaches.org/resources/high-pressure-headache/
Are you still working with your doctor or specialist to see if there are other tests that should be considered?
@johnbishop my opening pressure on lp was 16 which is normal. Also my neurologist did not bring up any more tests