I had hypovolemia shock and almost died. Wow, this is all starting to make sense to me now.
Last edited:
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Empty Sella Syndrome
- Thread starter ScottTriGuy
- Start date
I had hypovolemia shock and almost died. Wow, this is all starting to make sense to me now.
The pituitary gland is the size of a pea. The hypothalamus is the size of an almond. I agree with you, most of our issues COULD stem from these small glands.
My take on the past 30 years:
The big named doctors, academia scientists, and Nath from the NIH, I agree, they have no idea where to look or how to look. Nath and the Academia just want to gather more and more data. Because more data, means ‘Big Data’, and using that term somehow makes them look more credible. It’s a farce, and I said this many years ago. It’s like, “ I don’t know what I am looking for, but I will keep busy collecting more and more data.” “And when I am done collecting massive amounts of data, a magic wand (Big Data) will magically align the data into perfect subtypes.”
Many of us with pituitary damage, may simply need to replace the hormones we can no longer produce or convert correctly. But some people on the forums don’t want to hear that. Instead they choose to glorify academia. They “dream” about ingesting a one time cure pill; they think academia will give them what they want. So they bounce from one hope to the next. They don’t learn to filter out the hype. It’s a roller coaster ride that creates casualties.
I think the government and acadamia care. I think the big named doctors care. But caring does not necessarily lead to competency.
So it’s a dysfunctional relationship, and the “dreamers” enable the process to continue.
So 30 years later here we are. I recently gave up on waiting for academia or the government. Now I follow leads to find a Pharma to help. I am taking my chances by choosing to cut out the middle man. Pharma seems to understand how to get things done. They have social and moral issues I disagree with, but they are profitable and know how to work the system. Pharma's have money, contacts, and experience. We need FDA approved drugs for ME, because many FDA approved for other Dx, are very expensive and out of reach for most of us paying cash.
Last edited:
How exactly is that determination made? I am not aware of a test that tracks the signaling from the pea sized gland? What exactly is enough?
Inara
Senior Member (Voting Rights)
You can determine the hormones that the pituitary gland produces: growth hormone (somatotropin), TSH, ACTH, FSH, LH, prolactin.
Allele
Senior Member (Voting Rights)
It seems there is more going awry in the brain than just pituitary/hypothalamus.
Hyperintensities, atrophy, inflammation such as with the microglia, this newer lactate buildup thing....on and on.
(I may be different than other PwME, bc I have terribly high levels of lead.)
Still, I think the ways and means of measuring what is happening in our brains has not been adequately investigated during this wasteland of decades.
Hyperintensities, atrophy, inflammation such as with the microglia, this newer lactate buildup thing....on and on.
(I may be different than other PwME, bc I have terribly high levels of lead.)
Still, I think the ways and means of measuring what is happening in our brains has not been adequately investigated during this wasteland of decades.
Yes, I agree. No PwME should be left behind. We are complex creatures. If I could hit the “like” button, multiple times I would.
Much more needs to be examined, studied, and tested. This thread was about pituitary, so I was focused more on that aspect (since it regulates hormones) in my posts.
I feel, our issues may be more interconnected than we realize. So fixing one point of failure, may improve more than just one symptom.
I feel ME is a fascinating thing to study, since multi complex systems intertwine. I wish more people felt the same way, ASAP preferred.
How do we change the perception, and make ME a cool thing to study?
“ME, exclusively reserved for Cool Scientific Researchers”
“ME, it’s a fascinating study. Mediocrity need not apply.”
Last edited:
Allele
Senior Member (Voting Rights)
A thousand likes to you as well, @MErmaid. That's a great campaign: make ME cool again!
and fwiw my thoughts were in response to @wastwater's doctor's ideas about it being ok if there's enough signalling going on.
(I so often forget to put the reply quote in, sorry :/ )
I feel that there has not been enough focus on patient experience, including their symptom lists as long as my forearm,
in making proclamations like that. (No offense to wastwater, don't mean it that way.) It just seems logical that when a human comes in with many many symptoms in conjuunction with mutiple organs/functions that might *otherwise* or *singly* deemed unimportant, it's time to hunker down and get curious.
and fwiw my thoughts were in response to @wastwater's doctor's ideas about it being ok if there's enough signalling going on.
(I so often forget to put the reply quote in, sorry :/ )
I feel that there has not been enough focus on patient experience, including their symptom lists as long as my forearm,
in making proclamations like that. (No offense to wastwater, don't mean it that way.) It just seems logical that when a human comes in with many many symptoms in conjuunction with mutiple organs/functions that might *otherwise* or *singly* deemed unimportant, it's time to hunker down and get curious.
S4ME membership is a “gold mine” for hidden treasures. Regarding marketing campaigns, we have our own resident expert. Don’t let his cute and adorable presence fool you, @arewenearlythereyet is the best sloth for the job.
Last edited:
arewenearlythereyet
Senior Member (Voting Rights)
Well thank you for that over generous write up @MErmaid ..you can be my recruitment agent any dayS4ME membership is a “gold mine” for hidden treasures. Regarding marketing campaigns, we have our own resident expert. Don’t let his cute and adorable presence fool you, @arewenearlythereyet is the best sloth for the job.
Now ...just need to find an employer that doesn't require me to use adrenalin and doesn't mind if I start work at 2pm
Well thank you for that over generous write up @MErmaid ..you can be my recruitment agent any day
Now ...just need to find an employer that doesn't require me to use adrenalin and doesn't mind if I start work at 2pm
Heck that’s an easy one! 2 PM London time is 6 AM Silicon Valley time. So get a remote job with an employer headquartered in Silicon Valley. The pay is excellent, and if they fly you out, you will find the California weather to be awesome. California boasts Stanford University (Montoya, M Davis, R Davis, Genome Center) located in Silicon Valley. Then in Southern California, University of San Diego employs Naviaux.
I don’t think anyone in California has heard of the PACE trial nor EC. In Silicon Valley, it’s more about Computer Science, and Electrical Engineering, and of course Marketing to sell adds in Google, Facebook, and Twitter.
Last edited:
Hoopoe
Senior Member (Voting Rights)
I would be cautious trying to read much into ESS. It's commonly found in patients that don't have any major health problems, so it's not suitable as diagnostic marker. You have to measure the function of hypothalamus and pituitary with specific stress tests to find out whether there is a problem.
Besides the L-Argenine Stim test, which ones do you recommend?
Inara
Senior Member (Voting Rights)
You know, that is a brilliant idea.
Last edited:
Yes, that seems to be the main issue, finding a specialist that is well versed and helpful. Regarding Empty Sella specifically, I thinks it’s impact may differ among patients.