Aa
CFS/ME/FMS------->Chiari
Many if us have received these incorrect Dxs, often years before Chiari. My NS has noticed that 30-50% of his Chiari paitients "carry" a CFS/FMS Dx.
The following is a medscape article (requires registration) about a new consensus for CFS/ME for primary care drs & other health care pros. Not only is this significant because most here will recognize these symptoms as identical to ours, but the consensus panel recommends eliminating the 6 month waiting, i.e. suffering, period before a Dx.
Also, this is EXACTLY what Chiari patients need, a consensus! If a patient is screaming in pain, is crushingly fatigued, is dizzy, can't see, falling over, can't digest food, is incontinent, has no quality if life, etc, docs need to think CHIARI!
It's ironic that recognition has come to CFS/ME before Chiari when, in some cases, it's the same beast; and that Dx will get you nowhere. For years!
http://www.medscape.com/viewarticle/773334
The following is a medscape article (requires registration) about a new consensus for CFS/ME for primary care drs & other health care pros. Not only is this significant because most here will recognize these symptoms as identical to ours, but the consensus panel recommends eliminating the 6 month waiting, i.e. suffering, period before a Dx.
Also, this is EXACTLY what Chiari patients need, a consensus! If a patient is screaming in pain, is crushingly fatigued, is dizzy, can't see, falling over, can't digest food, is incontinent, has no quality if life, etc, docs need to think CHIARI!
It's ironic that recognition has come to CFS/ME before Chiari when, in some cases, it's the same beast; and that Dx will get you nowhere. For years!
http://www.medscape.com/viewarticle/773334
These patients worked VERY hard, for years, despite their limited health. I know, I was one of them. I organized an activity in which we sent hundreds of our empty pill containers (representing the empty concern for our illness) to the American Medical Women's Association.
Not only did they acknowledge the concern in their newsletter, they began to offer MCE credit for fibromyalgia!
It also helped that some patients who were college professors were able to articulate and/or study the illness.
A Senator whose daughter has CFS arranged for Senate testimony, from patients & doctors.
Last but not least, these wonderful doctors have been advocating for their patients, for decades!
We need strong advocates like that!
If I'm ever not stretched so thin, I will do some contacting with these doctors who wrote the consensus, explaining Chiari and how the symptoms are identical. The stone wall in our case are the NLs & NSs. (& sometimes the radiologists)
Not only did they acknowledge the concern in their newsletter, they began to offer MCE credit for fibromyalgia!
It also helped that some patients who were college professors were able to articulate and/or study the illness.
A Senator whose daughter has CFS arranged for Senate testimony, from patients & doctors.
Last but not least, these wonderful doctors have been advocating for their patients, for decades!
We need strong advocates like that!
If I'm ever not stretched so thin, I will do some contacting with these doctors who wrote the consensus, explaining Chiari and how the symptoms are identical. The stone wall in our case are the NLs & NSs. (& sometimes the radiologists)
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