My issue has been going on for almost three years now.
I am on this forum because my latest neurologist said he thinks I MAY have IIH or/ Pseudotumor Cerebri.
HISTORY : I remember being about 11-12 on my grandmother's couch every other night because I had horrible headaches. I would have to put a rag on my head in the dark.
I had my appendix removed.
I had a compound fracture, to my left arm. Almost lost it and had to be medivaced ( sorry for the spelling ) to the hospital.
I have really low vitamin D & vitamin B12 deficiencies but not pernicious anemia.
Around 2004, I stopped having headaches... THEN about three years almost ago...I started having tingling in my cheeks. Went to my regular DR and had blood tests done.
Only found defiencies. I then went to my first neurologist. Had a neck/head MRI with contrast. Nothing abnormal. Then as the weeks went on, I had tingling in my fingers, neck and back pain.
I'd throw up, felt off balance, and went to the er about 19 times. I had abnormal antibodies in one of my titer blood tests but then that was ruled out.
Saw an infectious disease dr, spine doctor, rheumetologist, three neurologist. All found nothing.The day I fainted they admitted me at the hospital. I had a LP which came
back normal. I had a whole spine MRI which they found nothing.
From then on, I have seen 3 neurologist. The first suggest a CSF Leak ( low pressure ) not because my eyes showed anything but off of symptoms. They never found a leak.
Its 3 years later and im still in pain every single day. My latest neurologist/opthamologist suggested since im overweight and because I now see ( snow vision ) that it may be IIH.
I have no papilledema ( spelling, sorry ). I am supposed to take meds to help for migraine WHICH I just got after ALL these years. None of them really suspect typical migraines tho.
Things I thought I could have, CSF LEAK, Brain Sag, Lymes Disease, Vinous Sinus Thrombosis, Chiari Malformation? Anyway, I have really bad lower back pain, neck pain, random pressure in
my ears and head. TIngling everywhere but mostly on the scalp, feeling off balance, facial pain, and more.