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Posts (7)

Feb 10, 2017 · Empty Sella Syndrome in Brain & Nervous System

yeah, I really think there is not enough consensus on this whole thing…some say ..”Headaches yeah of course” others say no, others say “No bearing on you and your health its just coincidental” etc etc…there seems to be a different story from all fronts. Its either Coincidental or Incidental….and I don’t think there is one deliberate answer for anyone. If the hormones are all normal, then they say “Its not a problem” etc etc…..at or during or because I finally wanted an answer to most likely menopause stuff, I had memory problems, body aches etc etc…and of course other issues ….and it was diagnosed on the routine Neurological work up MRI. Was told it was not an issue, yet of course was also told “Oh you have artifacts showing migraines” uh yea, I have bad headaches but never complained to the extent to go after diagnoses…but “lets get back to this empty sella thing” uh yeah, no problems there, not an issue….” I think all of us want to know more about this “orphan” syndrome and why so many who have it seem to have the same symptom patterns..We all need to “get our heads together” so to speak right?

Jan 26, 2017 · Familial pre-senile Cataracts young adults in Eye Conditions

Happy to meet others, It is good to know we are not alone. Thanks!!!

Jan 26, 2017 · Empty Sella Syndrome in Brain & Nervous System

I am finding this was the only location on the net that actually had a few folks commenting on this little known condition. I would like to see more time devoted from those who have been diagnosed so we can all put pieces together of this puzzle to know if/what/how and when this is actually a health issue. So much is not known. We/I all of us should learn more.

Jan 26, 2017 · Empty Sella Syndrome in Brain & Nervous System

I have invited another person to this forum and I hope she makes it here, She too…same stuff…

Jan 26, 2017 · Empty Sella Syndrome in Brain & Nervous System

Well, kinda weird, since the Neurologist who found it in my radiological exam essentially said its nothing to worry about…yet, I have started to weed out information the last 6 years and have found others with all the things that brought me into the whole thing with the neurological exam and the symptoms are all mirrored in complaints. So I guess it boils down to this….Do we associate our symptoms with this or do we believe the MD’s who say, “no nothing to worry about..just treat your symptoms as if you were just anyone else with headaches, fatigue, menopause etc” You tell me.

Jan 12, 2017 · Familial pre-senile Cataracts young adults in Eye Conditions

I was diagnosed with cataracts, fast progressing yellow cataracts at 29, my sister had hers diagnosed around the same age. My Dads whole family, bros. and my grandmother were diagnosed in their early years as well, back in the early 1900’s. When I first thought my windshield was dirty I thought I scratched my eye, and went to my Dr. who sent me to a ophthalmologist, who told me..you have cataracts…have you been exposed to radiation or steroids? he asked. I said no..but my Dads whole family had it when they were young too…okay he said..its familial…okay..so I told my Dad…you are my Dad! That was almost 30 years ago. I have had my implants for 28 years. My sister as well. I was lucky.

They had just approved implants in people younger than 50 about 5 years previous to my surgery’s so there was no arguments. My sisters experience through another health care provider wasn’t as friendly. They wanted to be sure she wasn’t exposed to radiation and steroids and almost did not believe her story about our Dads family…
needless to say….why even worry or concern myself with this? well we have had other unexplained issues with auto immune issues and other eye issues as well. So not to worry, or worry I guess to what end?

I guess what I want to know is this…and this is a pretty precise question….on the DNA strand where this is, what other issues can we expect? What other DNA issues will there be that are carried on the DNA strand that carried our pre-senile cataracts?
Would love to hear other stories as well. I also have corneal dystrophy and of course eye strain because my eyes have evolved to being mono- focular, so one is far and one is near…end result, glasses and eye strain chronically. Anyone else out there? I

Jan 12, 2017 · Empty Sella Syndrome in Brain & Nervous System

I was told I had an Empty Sella when I went through a Neurological workup for problems I was having during the change of life. Memory issues etc. As part of the whole work up a Brain MRI was done. Then I was told this was what was found. My journey began, I was told what it was incidental and nothing to worry about and it wasnt causing my problems. Then I read through all the net and found absolutely nothing except other patients who were told about their incidental findings as well. I read that allot of us patients had similar issues, and either the Drs. told them YES there is the explanation or NO it is not responsible for their problems. I started to realize at that point, MDs didnt know anything about this disorder and basically everyone gets a different story. Either, it should cause no issues, or yes it does. Opinions all over the place.
The pituitary gets flat because of either you are over weight, you are a woman, have high blood pressure, have high cranial pressure, you were born with it…etc etc..the list goes on.

I periodically remember that I have this and then my curiosity gets energized again.
So…I see the last entry here was 2015, well, now its 2017, so we shall see if this orphan disorder has any more patients asking questions, and if we get any more answers.