Pseudotumor Cerebri

[Rhonda189]

I'm a 28-year-old female and I've been told that I may have pseudtumor cerebri.  I'm not obese, I'm 5' 3" and weigh 140lbs. I'm currently trying to lose some weight.  I'm taking Diamox 500 mg twice a day, it hasn't signifigantly helped me.  All my brain MRI and c-spine MRIs came out great, no signs of tumor.  The doctor did a  lumbar puncture and he said that my pressure was four times what it should be, my spinal fluid was tested and that came out great.  I still wonder if I have pseudtumor cerebri because I don't have all the symptoms. I don't have any headaches or vomiting.  I don't have double vision.  I do have a lot of inflammation and swelling in my retina, I'm very concerned about going blind. I have tingling really bad in my legs and also in my facial area.  I want to know if anyone else out there has these same symptoms or If theres a doctor out there that can help sort this out? Is pseudotumor cerebri the only neurological disorder that I could have?

[grandmammy]

hi Rhonda                      i had papilledema pseudetumor cerebi hoping i spelling it correctly. ive suffered from this diagnosies sense 1971 and it was contributed to Ortho the birth control pills, when they first were manufactured. i took them @ 15 yrs old because i suffered with menstral cramps.Now in the 21ft cenutry they have found that this may b the cause. Im looking for someone to help me sort this problem out. now  im in touch with a good through eye Dr. who is going to look into my case to see  how im doing. My last spinal was when i was 50 yr old. Yes ive bn obese  lost weight and still suffered i acutlly went blind for serval months but i am better but i still need to know how am i doing now

hope u get well                                                                       grandmammy

[madwinmarie]

Hey Rhonda-
My name is Madison and I am a nineteen year old girl who has too been diagnosed with a pseudo tumor. According to BMI I am over weight, however my of neurologist and neurosurgeon have both told me that people who are diagnosed with a pseudo tumor are typically much bigger than me, considered obese, and much older than me. I experience a range of symptoms from horrible headaches,"flash vision", temporary blindness in my right eye and dizziness. The pressure in my cranium also causes my optic nerve to swell which gives effect to my doctor diagnosed papilledema. I also take a Diamox Acetazolamide twice a day. The tingling in your legs and face may be from the medicine because I experience a tingling sensation in my finger tips and toes. It means we are not drinking enough water when we experience these symptoms. All and all it seems to me that you and I have the same "side effects" of having a pseudo tumor. We are actually blessed because most people who have a pseudo tumor also experience seizures, black outs and extreme nausea. I hope that you start feeling better! I was diagnosed eight months ago, and my spinal pressure was also four times higher than it should of been. I'm getting ready to get my second spinal tap because I am almost experiencing no more symptoms! So hopefully my pressure is lower! The best of luck to you!

[DrNoopurMD]

Hi,

How are you?
Pseudotumor cerebri is also known as idiopathic intracranial hypertension and is the most common cause of papilledema which can result in optic atrophy and blindness.
Visual examination will characteristically show hemorrhages and optic atrophy. There is no tumor as such in the brain.
MRI is generally done to rule out other causes of raised intracranial pressure like brain tumors, hydrocephalus and meningitis.
Have you undergone an ophthalmological examination? Please elaborate.

[mamita00]

Hi Rhonda, nice to meet you. Sorry it's under such circumstances. That's great that you want to lose weight but it is not a cure, unfortunately,. I guess if you wanted a second opinion it wouldn't hurt but do you doubt or have any misgivings about your doctor?  You don't necessarily have to have all symptoms to have ptc. I knew something was wrong with me because my vision would completely gray when I stood up or bent over so eventually I went to the eye doctor. From there he sent me to the hospital because he had seen the papilledema. Other than that I had no symptoms,  thought. Later came the headaches and what I never realized was a symptom was one, neck pain- intense. Have you talked to your doctor about your concerns? You're your best advocate so don't be afraid to speak up. I hope I helped in some way if you haven't been helped already. Best wishes!         Kim