Article: Empty Sella Syndrome and CFS: A patient study

You can view the page at http://forums.aboutmecfs.org/content.php?363-Empty-Sella-Syndrome-and-CFS-A-patient-study

 

Willowj - I think the spinal fluid is also tested for certain "diseases" present. I don't know here and imagine yours (US) much more comprehensive. Whatever they looked for they did not find in mine. Always felt that that was the stage (before years of ME cascading illhealth) something should have been found. At least the process was painless as they had bothered to look at spinal Xrays to guide them through. Are they looking for the right thing comes to mind - all the viruses known to infect the nervous system.

 

very interesting. I'd never heard of this before. Id love to partake but i doubt i could get my MRIs from the hospital. Ive had 2 or 3 done over the years (none before i had ME). This condition has never been mentioned on them.

 

This is an interesting hypothesis, at least for a subset of sufferers. I hope the Biddle/Peterson scans are freshly
reviewed.

Personally, I've only had a CT scan, no MRI.

 

Count another one with several MRI's available, done from year 2 through year 5. No mention of empty sella, lots of white spots. Messed up the only spinal tap ever done so no useful result. At the time they were thinking CSF leak, so looking for low pressure, not high, but did not find out anything.

 

Thanks PamB

 

Maybe this explains my elevated prolactin levels. (6 years into my illness - so no idea what they are a couple of decades *sob* later.)

I also had CT scans, to rule out a tumour. But no MRIs.

Best of luck with the study - sounds very interesting!

 

Willowj - I think the spinal fluid is also tested for certain "diseases" present. I don't know here and imagine yours (US) much more comprehensive. Whatever they looked for they did not find in mine. Always felt that that was the stage (before years of ME cascading illhealth) something should have been found. At least the process was painless as they had bothered to look at spinal Xrays to guide them through. Are they looking for the right thing comes to mind - all the viruses known to infect the nervous system.

thanks, yes, I think they can find MS and I don't know what all else. I'm glad yours was painless.

 

Cort, is this study looking for MRI's of all PWME or only those who suspect they may have ESS?

 

Just another thought to add Cort (MRI was 10yrs ago) High spots in the brain discovered when I could barely move a muscle to walk, barely speak, struggling to make sense of things around and permanently "lightheaded" or sleeping. It can be a pretty major and central brain "onslaught". Almost unable to process any information.

 

Cort, is this study looking for MRI's of all PWME or only those who suspect they may have ESS?

All MRI's because we think empty or smaller than usual sellas may be missed at times.

 

Just another thought to add Cort (MRI was 10yrs ago) High spots in the brain discovered when I could barely move a muscle to walk, barely speak, struggling to make sense of things around and permanently "lightheaded" or sleeping. It can be a pretty major and central brain "onslaught". Almost unable to process any information.

How fascinating ENID (in a horrid way).......What did they say about those spots and your problems. Did they link them up? or where did they know what to do with them?

 

No position unfortunately given - but the clustering in MRI findings sounds an interesting exercise. And I was just about to add a humerous comment to my last .......definately something missing or "empty". What my Neurologist was fairly keen to share were the brain scans. Off thread sorry to see XMRV story still unresolved.

 

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.

Komaroff and Jolesz did an MRI study too, 16 patients, the latter is at the Division of MRI Image Guided Therapy Program, jolesz@ bwh.harvard.edu.

Their 1994 paper doesn't mention empty sella, only UBOs, but if their old films exist maybe they'd take a second look or remember seeing it?

http://www.ncbi.nlm.nih.gov/pubmed?term=komaroff AND jolesz

 

Great Detective Work again CORT!

Hi All,

I am a 58 y/o male with Empty Sella Syndrome. After discovering my testerone level was 125 (very very low) my Doctor put me on six months of the Androderm Testosterone patch. After the six months of testosterone "therapy my testosterone came in at a hunderd! Against my Doctor's protests I demanded a MRI and other testing. The tests all came back "normal. My MRI discovered an Empty Sella and my Doctor said it was nothing to worry about. I am a chronic Pain patient with spinal stensois, arthritis and I had a cervical disectomy with fusion and allograpgh in 2005 which did not take away my pain but threw my CFSFM in high gear. The same Doctor fired me as a patient and barred me from the practice. I was a big pain. Three weeks after being fired I got my test results from Reno at WPI. I tested positive for XMRV in September 2010. I am now on my fourth month of Valcyte. My new CFS Doctor at the Northampton Wellness Associates in Northampton Mass has me taking a biodentical testosterone that I apply. I am also taking DHEA.

Cort would it be worthwhile to set up something to poll how many people with CFS/FM who have Empty Sella at Phoenix Rising? My pain is in my spine and I think there is a connection. I tested positive for HHV6, Mycoplasma, Chlamydia Pneumonea and the general laudry list of secondary infections.

Thank You Cort for your great Detective work and the great article on ESS. I have searched for connections to ESS in the past with out much to show.

 

Hi All,

I am a 58 y/o male with Empty Sella Syndrome. After discovering my testerone level was 125 (very very low) my Doctor put me on six months of the Androderm Testosterone patch. After the six months of testosterone "therapy my testosterone came in at a hunderd! Against my Doctor's protests I demanded a MRI and other testing. The tests all came back "normal. My MRI discovered an Empty Sella and my Doctor said it was nothing to worry about. I am a chronic Pain patient with spinal stensois, arthritis and I had a cervical disectomy with fusion and allograpgh in 2005 which did not take away my pain but threw my CFSFM in high gear. The same Doctor fired me as a patient and barred me from the practice. I was a big pain. Three weeks after being fired I got my test results from Reno at WPI. I tested positive for XMRV in September 2010. I am now on my fourth month of Valcyte. My new CFS Doctor at the Northampton Wellness Associates in Northampton Mass has me taking a biodentical testosterone that I apply. I am also taking DHEA.

Cort would it be worthwhile to set up something to poll how many people with CFS/FM who have Empty Sella at Phoenix Rising? My pain is in my spine and I think there is a connection. I tested positive for HHV6, Mycoplasma, Chlamydia Pneumonea and the general laudry list of secondary infections.

Thank You Cort for your great Detective work and the great article on ESS. I have searched for connections to ESS in the past with out much to show.

Have you heard of Dr. Woods comments on spinal narrowing in FM (and presumably CFS). I know someone who came down with CFS after an accident - and his MRI's show spinal arrowing. I think it may fit for me as well - if I do neck stretching exercises I get really ill; there is something wrong with that part of the body for me. Dr. Perrin is focused on this area as well and with spinal stenosis who knows.

Apparently endocrinological problems such as your are simply not dealt with well - its so puzzling isn't it? You have clear abnormalities and yet they chase you out of the office......

Any progress on valcyte and how much are you taking?

 

I have been cleaning out my "massive" amount of medical records and found the results of an MRI done in 09.

I never paid much attention to it because my doctor said that it was normal but, as I'm reading the report, I see "there is an empty sella which is an anatomic variant".

Is this what you guys have been talking about?

 

if I do neck stretching exercises I get really ill; there is something wrong with that part of the body for me. Dr. Perrin is focused on this area as well and with

I also have issues like that... if anyone tries to treat my injured neck with traction I get really ill. they say it's strange because most whiplash patients like traction.

 

I have physical custody of my MRI films from 1987 about 6 months into the illness. The MRI was done in Reno with the 1.5 unit mentioned by someone else, was ordered by Dr. Peterson and read by Dr. Biddle. The report says normal. They were primarily focused back then on small white spots they were calling lesions. My Spinal tap pressure was normal at 100mm done in 1990. I haven't had either test done since.

However I can help PM me.