Hi, my name is Jen, I am 36 and have recently been diagnosed by my family Dr with having a pseudotumor cerebri. After having a MRI, because he wanted to see my pituitary gland to see if that could be the cause of me leaking breast milk and my youngest is almost 6 years old. Then instead called and said they found the ptc (supposedly). They were getting me a neuro consult which is not until October. They told me to see an eye Dr. so I did and he says he thinks the diagnosis is wrong. He said there is no pressure built up in the eyes and I am not an obese person at all. I am 5'7" and weigh 167. I am healthy and used to walk alot until I started getting migraines that are unbearable at times. I am scared as to what else it could be, I never get sick or vomit with this I am just tired, weak, my muscles hurt, and the headaches. My vision is not good, but with new glasses it will improve the eye dr said he wont give me new glasses until I see the Neurologist and get the ptc under control with meds. If it isn't a ptc what are other possibilities it could be?

Welcome Jen,

Keeping in mind we're not doctors here -- just peer support (albeit some quite knowledgeable) -- I hope someone seeing this may have some ideas for you to discuss with your doctor(s?)

Your post caught my attention because it's the fourth that I've seen within the past week re: pseudotumor cerebri (PTC) (a.k.a. Idiopathic Intracranial Hypertension (IIH)). You can find other posts in the archives (try both terms separately) by using the Search facility.

As to why doctors suspect this or that, I'm reminded of an old joke...

The difference between a general practitioner and a specialist is that a GP treats what you have, while a specialist thinks you have what they treat.

Not making light of your situation/feelings -- many of us have been down the road of frightening symptoms and the ordeals of modern medicine. We've been where you are -- maybe not with PTC/IIH, but with whatever has brought us here together. I suffer from debilitating migraines myself (among other things).

Some of the specific forums where I've seen PTC/IIH discussed are:
General Health Conditions & Rare Disorders
Headache
Hydrocephalus
but it has shown up in other forums as well, so again, I encourage you to try the Search tool.

Doc