1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Article: Empty Sella Syndrome and CFS: A patient study

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 11, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Sounds a great idea Cort, especially as the pituitary has the controlling influence over so many systems. My own Neurologist (MRI ten years go) didn't specify except "high spots" in the brain and high pressure spinal column. He did add the time (a bit bemused) - it could be ME - they think it's viral - find someone who knows and I will release all our findings. This was just before my rapid decline and passings out. A great piece of research. My own Neurologist actually apologised.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Interesting ENID because high pressure in the brain can actually contribute to ESS. I have high spinal fluid pressure as well; the only fun I had after the spinal tap was the couple of hours immediately following it when my pressure lowered and I felt really good!
  4. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Yes me too Cort - some relief after my own. The Neurologist kept telling me not to keep bearing down at the time - seems they were gathering too much - but I had never borne down during the whole process.
  5. Gemini

    Gemini Senior Member

    Messages:
    383
    Likes:
    230
    Cort,

    Sounds worthwhile to go back and look. Hundreds of MRI's were done between 1985-88 by Dr. Royce Biddle at the Reno Diagnostic Center on Peterson/Cheney patients, results documented and presented at conferences (see what old timers remember!).

    Biddle later moved to Stockton, California, perhaps you could talk to someone about his work re:Empty Sella, if he ever saw it in patients? Wonder if his old films exist, they were done on the first MRI machine installed in Nevada, a GE 1.5 Telsa? Dr. Thomas McNamara presented Lake Tahoe MRI results focused on UBOs at the Third Annual Symposium on CFS and the Brain in LA in 1992. Wonder if he saw Empty Sella or ever looked for it?
  6. Gemini

    Gemini Senior Member

    Messages:
    383
    Likes:
    230
    It amazes me that researchers have not determined the cause of high spinal fluid pressure in ME/CFS after all this time. Nearly every patient tested in the 1934 epidemic had it.
  7. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    More and more interesting Gemini - some relief after "spinal tap" but it didn't stop the whole cascade of ME symptoms (years of decline). Since the pituitary is so to speak a master gland it's involvement looks pretty convincing. I wonder if the brain "high spots" (never revealed where by my Neurologist) were in around this area. I gather looking into the Web "high spots" are an abnormality but still no exact agreement as to precisely the whats and whys. May also involve an infection ? - just a speculation.. Pressure in the spinal column and head (head bursting headache) very much part of my own pattern. Hoping MRI's come in to you Cort - that would be quite a study.
  8. ldhunter

    ldhunter

    Messages:
    26
    Likes:
    5
    I have a partially empty sella, and 2 or 3 MRI's to contribute if you want them. I never presented with lesions on my brain, but have had the high CSF pressure (480 at my worst) and my SPECT scan revealed low circulation in my temporal and frontal lobes. All connected?
  9. Kelvin Lord

    Kelvin Lord Ampligen Journalist

    Messages:
    60
    Likes:
    8
    Colorado
    Count me in, Cort. I found out just 3 or 4 years ago I have an empty sella. Sounds comical to say it in that way, because as usual the medical terminologists who invent the names for things that afflict us seem bound and determined to ruin our self-esteem. If I say to people "I have an empty sella" they either respond with "Well that explains your personality," or look at me like I just said "I have an I.Q. of 12." The way I discovered this "empty saddle" was interesting. I had gone to an Endocrinologist because some of my hormone tests were whacked out. He said in passing "it would be rare if you had an empty sella." After he explained what that meant I asked him "can you test for that?" Turns out a simple MRI can reveal them, as your images confirm, Cort. But the Doctor wouldn't run the test! I finally said to him, "I am INSISTING you take a look inside because I think I have an empty sella!" He said, "Well, if you put it like that. I'll do it just to prove you wrong."
    Later of course he had to eat humble pie. But the point is, I KNOW I did not have an empty sella before I got hit with this disease. Is ME/CFS causative, I'm not sure. But it is just another "sign" to me that these viruses we battle are insidious, and seem hell-bent on crossing the blood brain barrier, and getting to our "master cylinder."
  10. WillowJ

    WillowJ Senior Member

    Messages:
    2,932
    Likes:
    2,365
    WA, USA
    that's very intersting.

    the increased spinal fluid pressure sounds like I should have that... how is this diagnosed?
  11. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Thanks Gemini....Peterson was the first guy I thought of... We were wondering the same; was empty sella was looked for while they were looking for the punctuated white objects or if it was present - if it was disregarded as a developmental or not important issue.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Cool Idhunter - it looks like you've got it all - high pressure in the spinal fluid (I believe high pressure in the brain can mess with the sella - and you have low circulation....sounds like a fun brain to have :rolleyes::rolleyes::rolleyes:

    Thanks for offering. We'll be in touch.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Too funny Kelvin....I can just picture you saying "I swear I have an empty sella" :D:D:D.

    That master cylinder/virus idea is what we are thinking. For one thing it's not far from the sinuses to the sella and there's alot of sinuitis in CFS...

    So far we have 4 men with confirmed empty or distorted sellas.....no women yet which is interesting given that ESS hits more women than men...
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    All you need is to do is get a spinal tap

    :cool::cool::cool::cool::cool::cool:
  15. ldhunter

    ldhunter

    Messages:
    26
    Likes:
    5
    I'm a woman :):victory:
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    [​IMG][​IMG][​IMG]

    :D:D:D
  17. WillowJ

    WillowJ Senior Member

    Messages:
    2,932
    Likes:
    2,365
    WA, USA
    oh, yay :(

    Thanks for the info. I was hoping (dreading) having one of those done eventually anyway...
  18. ldhunter

    ldhunter

    Messages:
    26
    Likes:
    5
    I've had lumbar punctures performed by a couple of neurologists, but my best experience was by Dr. Peterson. He has mastered it, and has very helpful directions to help get you back on your feet post procedure.
  19. Molly

    Molly

    Messages:
    20
    Likes:
    14
    Hagerstown, MD
    Is it a Lumbar Puncture that proves the "Empty Stella" or something on the MRI?
  20. WillowJ

    WillowJ Senior Member

    Messages:
    2,932
    Likes:
    2,365
    WA, USA
    thanks! I'm hoping for a referral to Peterson for this; I think it's indicated in my case

    Molly, the Lumbar Puncture is for high spinal fluid pressure... a rabbit trail, mostly for my benefit, sorry... it is the MRI which shows the Empty Stella

See more popular forum discussions.

Share This Page