My mother has MS. I have Intracranial Hypertension. Some of my symptoms for IH are very similar to MS. As my mother has it, and I've had similar symptoms I thought it was imperative to be checked for MS. An MRI was done. I was shown the results of this MRI and this is what I saw. Lots and lots of small white spots all over my brain, although not so much near the center of my brain. This center area is what my neuro-opthalmologist said was the most important part. Almost jokingly he said, "You have MS.....Not." Like he was a teenager telling a friend that "You got an 'A' on your test....Not." As this was prior to my diagnosis with IH, and as I had been very ill for 20 plus years with no firm diagnosis...you might imagine how his demeanor came across as both insensitive and offensive. I began to cry. He said, "Why are you crying? I just gave you great news." I said, "Yes...but, I've been seeing you now for the last two years. I typically wait in your office for at least three hours before I'm seen...usually while in pain. My symptoms have been worsening over the last 20 years and when I come in to be evaluated for something as serious as MS...which my mother has...you seem amused by the ability to tell me that I don't have it. At this point, I would rather be told that I have MS than continue to suffer with no diagnosis only to have my doctors treat me like a drug seeker or a crazy person." He dropped me from his practice! Two weeks later, with the worst pain of my life, I went to the hospital. A lumbar puncture was done. An eye exam was done. And I was diagnosed with a rare disorder called Intracranial Hypertension. While I am glad to finally be diagnosed...I must tell you that in many ways I am still screwed. Firstly, because my disease is rare, there are very few doctors who know enough about it to treat me. Secondly, because the meds used to help with IH are really nasty causing and they rarely work as they were created for other ailments....as such, even when they do work their therapeutic value wears off rather quickly. Third, there is no cure. Fourth, I will have this disease for at least the next 20 years if not for a lifetime. And lastly, because in an effort to find the ever elusive cure...I had brain surgery to have a shunt put in...I only got 30% relief.

All that being said....I'm writing you all now because I am curious to know how you were diagnosed. If you ever saw your MRI and if so, what did you see? Were your MRI's similar to mine or what does MS look like on film?

MS is a horrible disease. I'm so sorry that so many of you are suffering and to know that this disease continues to rise in it's number of victims. While I hope to never have MS...I know the chances are fairly high given that my mother has it and given that I have IH...as there is a connection between the two.

Thank you in advance for your help. I hope all of you are doing well.

Sincerely,

Monkeymom3