Finally Know What's Wrong With Me!

All my life I knew something was not right with me.  Obesity plagued me no matter what I did, I even gained 5 pounds after fasting for a week.  I have an abundance of facial and body hair, my periods were excruciating from the first one, while being irregular and quite heavy.  I always seemed to have headaches and inexplicable nosebleeds.  As I got older, my sense of smell began to sometimes quit or I could smell some things and not others, I  even smelled things that weren't there.  Fatigue was common as well. 

It wasn't until after I had a CT to find out why I was having so many severe headaches that they found the hyperostosis frontalis interna.  I did some research online and found a site that listed the symptoms of Morgagni-Stewart-Morel syndrome and I ticked off all the symptoms on the list.  At last, I knew I wasn't going crazy!  There was an actual medical condition with a name for what I was experiencing.  That was SUCH a relief!  I would tell doctors of my myriad of symptoms and they would look at me like I was nuts.

When I was 19, I went two months without a period and then when I finally go it, I went to bed wearing 3 hospital sized pads and woke up 2 hours later swimming in blood and passing huge clots the size of grapefruits.  My mom called the doctor who suggested I was having a miscarriage, which was impossible because I was a virgin at the time.  I don't know if that is attributed to the Morgagni-Stewart-Morel or the PCOS that I also have.

When I got pregnant with my oldest child, I gained 40 pounds the first week!!!!  I wasn't even eating much and was throwing up constantly.  then I gained an additional 60 pounds in the next three weeks.  I developed an aversion to food and my husband had to force feed me for most of that pregnancy.  I never lost the weight.

Recently, I have started to experience seizures on top of everything else.  So, I'm wondering if there is anyone else out there who has had similar experiences.t
Hilsmom Hilsmom
2 Responses May 15, 2012

Whats the prognosis and treatment?

I think Im about to be diagnosed I have the thickened skll and thyroid problems. Do you have thyroid issues with disorder?

Also had epilepsy all my life