So I've had migraine disease since I was 18. It runs in my family, my mother had it, my sister, my brothers, my cousins, and now one of my nephews. All diagnosed by neurologists as migraineurs not by primary care physicians or by themselves. But by someone who specializes in the brain.

Anyway I've just gone through another horrible attack of migraine that lasted for 25 days straight. I never got relief from my meds. I had to go to the ER and back and forth to my neurologist for treatments that didn't work. I went for a week and a half without sleep because the migraine caused insomnia, spinal pain, confusion and memory loss. Also, personality changes, vision and hearing changes, balance problems, frequent urination, constant thirst no matter how much I drink and agitation. Oh, another strange thing is my pupils don't dilate like normal people's do, mine are usually closed down very small and tight which is highly unusual. I learned this from my eye doctor two weeks ago when she was doing my eye exam, she had to use some very powerful dilation drops a couple of times to get my pupils to open even a little. Even then they barely responded. At the end of the appointment she said she wished I had bought a friend with me because I was going to be blinded by the sunlight (a white out) and it would make my migraine even worse. Basically she said it would take two days for the dilation to wear off - she wasn't joking. I lay in bed with my blackout nightshades over my eyes. The light from my Timex Indigo watch was too bright and I covered my digital alarm clock display.

Now I'm wondering if migraine disease is really all that I have. I finally was able to return to work yesterday and while at work a name spontaneously popped into my head - Karen Duffy. Ex-MTV VJ Duffy.

How when I haven't been able to remember what day it is or whether I went to the bathroom or whether I closed the front door to my house, I could remember her name I don't know. But I could remember that Karen Duffy had a problem similar to what I'm going through now.

Duffy came out a while ago and said she had something called Neurosarcoidosis. If I remember her story right it presented like migraine disease at first too but didn't respond to treatment and got progressively worse.

So I looked it up last night...and out over twenty some signs and specific symptoms I have the majority. When I looked at the lab work required I've had most but no one doctor has put them all together, I realized that one test needed has already been indicating a problem but every doctor has been discounting the result because alone the test means nothing - my prolactin level is high. Means nothing to my neurologist because my head CT is clear no pituitary tumor, nothing to my gastric bypass surgeon because there's no pituitary tumor, and nothing to my primary cause well I don't know what the heck prolactin is and maybe she doesn't either. But elevated prolactin in combination with my high calcium levels and other symptoms starts to point toward something...

So I bring this up to my sister who's a registered nurse with over twenty-five years medical experience. She says honestly she knows of sarcoidosis but not specifically of neurosarcoidosis or if it could be mistaken for migraine disease. So I read her the JAMA and eMedicine pathology and information and she says "yeah, we need to ask about this".

I don't know, I just a frustrated artist with bad headache and unexplained spinal pain.