Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 2, 2010.
You can view the page at http://www.forums.aboutmecfs.org/content.php?91-Spinal-Tapping-For-ME-CFS
I wonder if you can comment on the Nasal autonomic nervous system testing. It has been my hypothesis for some time now that my nasal symptoms are not due to allergies, but to dysautonomia. I have looked around a bit in the literature for a possible connection between CFS and nasal dysautonomia, but have not found much in print.
Thanks for being so open about such a personal experience.
Kim...through all the years of dealing with me/cfs...one of the few problems I DIDN'T have were nasal!...until recently!
Now...periodically my sinuses feel swollen to the touch...my nose and eyes (especially my eyes...I walk around looking as though I'm CRYING!)) will begin to run/drain, my throat feels clogged, and my sense of smell has become so acute (even to the point of smelling odors that no one else can...don't know if this is all connected though)...and insult to injury - I have developed HSV1 (with little tiny VERY sensitive areas inside my nose!)
Some years ago (BEFORE I noticed these particular symptoms) I went through a battery of tests...and was told I had Autonomic Nervous System Disorder. Is this what you are referring to?
(btw...I'm one that NEVER gets a cold anymore...and have never had "allergies")
Thanks for bringing this up...it wold be nice to have some answers to this! jackie
I wish I could. My recollection - and this was about a year and a half ago - was that Dr. Baraniuk measured the opening of the blood vessels in my nose with this weird horn shaped instrument while I was contracting the muscles of one arm as hard as I could. He must have done the nasal thing dozens of times. As I remember he was finding that the blood vessels were constricting when they were supposed to be opening and vice versa. This would obviously be a big problem during exercise (less blood flow to the muscles?). There's more on this on a companion piece that I'm getting up.
I got nasal problems in my seventh year of CFS. Sense of smell reduced, inability to breath through nose and occasional nose bleeds. It was diagnosed as nasal polyps by one doc but they have not been seen by other doctors...
I too don't really suffer from colds but have some congestion which the a steroid spray will relieve to some extent. Interestingly, my wife has been suffering from a cold for four weeks now, my daughter was diagnosed with EBV and I am feeling pretty good. If I were religious, I'd be praying that she hasn't started on the CFS journey - she has begun to get weak fizzy legs, fatigue, poor concentration and memory.
Whatever happened to the Chronic EBV theory of CFS? Could it be that we get hung up searching for one cause of CFS? Perhaps, like viral meningitis, there can be multiple viral causes? If viruses are hiding in nerve tissue aren't they are going to be difficult to find, especially if localized?
Maximum respect Cort, on your spinal tap - way too scary for me. I will not be included in UK research programmes as 1) we hardly have any 2) they won't accept people with co-morbid psychiatric histories. I find this strange as I think feeling suicidal in the early stages of this condition is probably pretty common...
Kim, could you please message me. I've been researching this for some time and have a similar theory to your own. Maybe we can help each other.
I just read your very interesting article re proteins in the brain and your experience w/ all the testing. I forwarded them to my primary and CFS docs. It is weird for the past 3 years or so I have constant sinus congestion/ mucous all day and night; I know it has something to do w/ CFS but Dr. Komaroff says allergies ~ I've never had allergies. Could you let me know about more info on this. thanks for being a guinia pig and being so brave; I'd like to be in the study but I'm afraid:tear: my health is way too bad.
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