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Chronic Fatigue Syndrome

Posted by @comebackshane in Brain & Nervous System, Dec 11, 2011

Please save yourself a lot of wasted time and money and the real risk of having your medical records "polluted" by the Mayo clinic (my present endocrinologists words). Skip the Mayo for ME (CFS). I went to the Mayo in 2007 and was quickly dismissed as a psych patient. The endocrinologist even mislead me about a review of my past brain MRIs that showed a number of issues.

Compare the Mayo CFS website with Stanford site: There's a world of difference and at Stanford you'll actually receive effective treatment from someone who recognizes ME(CFS) as a serious immune issue with infectious CNS implications. The Mayo on the other hand has adopted the British/CDC model which is frightening in its willful ignorance of the real nature of this disease.

Tags: Infectious Disease, sleep problems

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Posted by @fatigued, Dec 14, 2011

I'm curious and very interested! I'll be checking out the site but could you maybe give me a little info on what kind of issues your MRIs showed? I received a pretty serious head injury and have since had days where it's too difficult to even get up and eat. Today it's tough work just typing this...which is why I was searching this site. They diagnosed me with Post Traumatic Hyper Somnolence and am on amphetamines to stay awake but they don't help with the fatigue. I'm semi fine most days but some days I just can't get off the couch. I can lay down for a couple of hours but will be fatigued again after a few minutes of being up. I just cant think and feel pretty stupid at times...I've had to check the spelling of several words here that I normally could spell. I live by myself and it can be pretty rough at times. Please let me know if any of this sounds familiar and any info about what help you got or if anything has helped.

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Posted by @powerofpositive, Dec 15, 2011

Did you have any "bleed" of your brain from the trama? Have you had another scan? You don't state how long ago this happened ( i am curious) but hope you are following up with your physician. Head injuries vary so. but from what I understand the healing process can take quite a bit of time. My husband recently suffered a brain injury (along with other injuried) from an auto accident. The first few weeks home where rough. He's been improving alot since but the fatigue is high some days. The docs want to do another scan to see how things have resolved.
Do you have any memory issues? Does Multipule activities around you cause you to become confused or has the medication they prescribed help you with focusing? I would be intrested in hearing more. I have read alot on the topic but personal experience usually has more insight.


Posted by @comebackshane, Mar 23, 2012

The issues that I have are infectious in nature (not traumatic). The MRI findings that were not communicated to me were early signs of infectious issues (empty sella and enlarged paravascular spaces) which within a year had progresses to calcium deposits (a clear sign of chronic infection in the sella). Within 18 months of having left the Mayo Clinic, I was diagnosed with florid diabetes insipidus (there were a number of tests that were shared with the Mayo doctor that would have pointed in this direction - these were ignored). Other clear signs of endocrine issues (a long history of very low testosterone values and marginal thyroid values were also over looked). My present endocrine status is a diagnosis of pan-hypo-pituitaryism.
I did have a good experience with the gastroenterologist at Mayo. Unfortunately the damage done by the endocrinologist far outweighed the good.

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