I too have seem to be "collecting" auto-immune diseases throughout my life.
I am 30 years old, single, no kids, diagnosed with Asthma, Heart Mummur, Scoliosis, Fibromyalgia Graves Disease, Hyper-thyroid, Hypo-thyroid (after iodine radiation therapy in 2005), been tested at least 10 times for Lupus, RA...etc etc. You know the drill. I used to be in shape, but have lost almost all muscle tone in the last year. I am almost 5'10 and weigh 160.
I giggled when you wrote the comment of how doctors think "Oh, great here is another women who watches too much oprah or mystery diagnoses." I have experienced that far too many times. The condescending response of "you found this disease on what site?" or "you saw this on what tv show?" They give you that look like "maybe you should lay off the web-md searches and make you feel like a crazy lady...I've done the "doctor shuffle" for years and years. It usually takes about 4 or 5 appointments before they essential tell me "YOU'RE FINE, YES YOU HAVE A FEW ISSUES HERE AND THERE BUT ESSENTIALLY YOU'RE HEALTHY." Which of course means that they could not figure what was wrong with me and do not have the resources to devote any further time to find out. They don't seem to realize those "few issues" are ruining my life!
Just recently I had to see a GI specialist due to many lovely stomach issues that I have been dealing with. He also specializes in Internal medicine and endocrinology. (If anyone is in San Diego, I HIGHLY recommend him and can give you his info.) Well, on my first visit he gave me what was the most in depth physical I've ever had in my life, and I've had MANY.
He sent me in for a colonoscopy/endoscopy to check rule out cancers, chron's, ulcerative colitis, ulcers, inflammation and those types of things. Well to make a long story short I woke half-way through the procedure. WIDE AWAKE. Screaming in pain as the colonoscopy tube bent its way through my intestines. The doctor gave me a second dose of anesthesia immediately and everything went black.
He said he had never in 25 years of practice had someone wake up! So this lead him to testing of EDS. So I can now add that to my list. :) It is bitter sweet to receive a diagnoses like that. Because on one hand you're symptoms are validated. It's like a feeling of "SEE, I TOLD YOU SO!" but on the other hand there is no cure. But, hopefully there are other treatment options which will be more successful than others.
Anyway, I just wanted to reach out and let you know you are not alone. And someone out there can relate to your story. If you ever need to talk feel free to email me.
I'll keep you in my prayers and send positive thoughts your way!!
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Hello,
I too have seem to be "collecting" auto-immune diseases throughout my life.
I am 30 years old, single, no kids, diagnosed with Asthma, Heart Mummur, Scoliosis, Fibromyalgia Graves Disease, Hyper-thyroid, Hypo-thyroid (after iodine radiation therapy in 2005), been tested at least 10 times for Lupus, RA...etc etc. You know the drill. I used to be in shape, but have lost almost all muscle tone in the last year. I am almost 5'10 and weigh 160.
I giggled when you wrote the comment of how doctors think "Oh, great here is another women who watches too much oprah or mystery diagnoses." I have experienced that far too many times. The condescending response of "you found this disease on what site?" or "you saw this on what tv show?" They give you that look like "maybe you should lay off the web-md searches and make you feel like a crazy lady...I've done the "doctor shuffle" for years and years. It usually takes about 4 or 5 appointments before they essential tell me "YOU'RE FINE, YES YOU HAVE A FEW ISSUES HERE AND THERE BUT ESSENTIALLY YOU'RE HEALTHY." Which of course means that they could not figure what was wrong with me and do not have the resources to devote any further time to find out. They don't seem to realize those "few issues" are ruining my life!
Just recently I had to see a GI specialist due to many lovely stomach issues that I have been dealing with. He also specializes in Internal medicine and endocrinology. (If anyone is in San Diego, I HIGHLY recommend him and can give you his info.) Well, on my first visit he gave me what was the most in depth physical I've ever had in my life, and I've had MANY.
He sent me in for a colonoscopy/endoscopy to check rule out cancers, chron's, ulcerative colitis, ulcers, inflammation and those types of things. Well to make a long story short I woke half-way through the procedure. WIDE AWAKE. Screaming in pain as the colonoscopy tube bent its way through my intestines. The doctor gave me a second dose of anesthesia immediately and everything went black.
He said he had never in 25 years of practice had someone wake up! So this lead him to testing of EDS. So I can now add that to my list. :) It is bitter sweet to receive a diagnoses like that. Because on one hand you're symptoms are validated. It's like a feeling of "SEE, I TOLD YOU SO!" but on the other hand there is no cure. But, hopefully there are other treatment options which will be more successful than others.
Anyway, I just wanted to reach out and let you know you are not alone. And someone out there can relate to your story. If you ever need to talk feel free to email me.
I'll keep you in my prayers and send positive thoughts your way!!
_love & peace_
Kirsten Robles
January 15, 2012 - 2:04pmThis Comment
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