Avatar universal

Multiple Scans, test and no dx still

To give a little background I am a 31 year old female, mother of 1, fairly healthy. Recently lost 40lbs and was working out 5 days a week.

To start my journey I went to an ENT due to ear ringing in my left ear. It was constant and was driving me crazy. Eventually I was getting left sided headaches which is when I decided to visit the ENT. I was given an antibiotic and sent on my way. Weeks later I am still having issues go back to ENT and they try me on pred for two weeks. Still nothing, dr determines it is TMJ. I visit the dentist get a bite guard and six months later I am still having the same issues. By this time the headaches have become fairly frequent and severe. Dr orders vestibular evoked myogenic potential test. This comes back with some sort of abnormality at this point I can't remember I just remember almost passing out doing the test. I was switched between the PA and dr after that test and the dr  orders a ct and it comes out normal. He decides to send me to neurologist. I had been to a neurologist years before due to headaches as I have always struggled with them but really just learned to deal with them. The neurologist doesn't even look me in the eye just sits down looks at the paper and says migraines its migraines, ordered an MRI and says I need to try botox. MRI comes back with white matter in non specific and neuro seems not to concerned. This was January of this year, I begin botox and have done one round. Now, two weeks ago I started experiencing pain in my right temple. At first I thought it was my tmj or I slept on it funny. Couple days later my temple is very swollen. I go to urgent care suspecting maybe it was my sinus' although I had no sinus drainage etc. The dr seems fairly concerned and suspects its temporal arteritis. He says I need to start prednisone and contact my neurologist within 24 hours. In the mean time I notice my vision is blurring on an off, i have facial numbness and my head is throbbing. I went to the ER that evening as my heart was racing and the facial numbness had me scared. A CT scan was done, this came out normal and they gave me pain meds and sent me home saying it was a headache. Saw my neurologist the next day, again he doesn't even look at me says your here for your follow up on your headaches.. NO my temple is swollen, my vision is blurry, my head is throbbing all on my right side. He basically dismisses it all and says I need to see eye dr. See eye dr, he does every test under the sun and determines I need to see a rheumatologist. I also went back to the er a few days later as my right side started experiencing weakness. They did a lumbar puncture that came back negative for infections but have not received the results for MS. My rhuematologist appt is today. They will decide if its truly temporal arteritis (which can only be dx by doing a biopsy and due to the fact that I do not meet the age of the normal they refuse to believe this is it). In the mean time I am suffering, headache, swelling, tingling in back and scalp, numbness in my face and lips, mild temp (consistently 99.8). I was off work for almost a week and have been barely making it through a day since. I have an MRI of the lumbas scheduled for friday. I really believe this all comes back to the abnormal VEMP test that was done months ago but I can't get anyone to listen to me. Whatever is going on happens in episodes and it worsens each time.
1 Responses
Avatar universal
Hi , you have a neurologist that also is dismissive , I'm not in the same boat as you but I completely understand your frustration.
I've been having strange neurological symptoms, seizures I've been diagnosed with non ecliptic seizures due to apprently some sort of trauma , he is totally convinced that counseling will help even though they found a small arachnoid cyst on my mri scan , doesn't need to be removed which I'm happy about.
But I wont accept his diagnosis
I have further tests that need to be done but I believe its sleep apnea related.
Just be patient with the results , I know it's hard they keep post -poning my appointments cause of coronavirus.

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