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 April 21, 2009, 03:30:47 PM
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Sr. Member
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Posts: 263
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Hello .. I am new to this forum .. I am also on the Mystery Diagnosis' the show's forum. That is where I found this forum.
It is so sad how many of us here are still undiagnosed and suffering being told that we are crazy. These things are in our "heads" then you too start to wonder... am I crazy?? and for a moment the doctors get the best of you.... "but I dont FEEL depressed and if I am its a result of doctors not anything else"
My story is pretty long since it all really started for me at 13 years old. I am now 28.
Good luck to each and every one of us and be us blessed from this pain and sickness soon!
Here are my entire symptoms for the past 14 years: some are recent, some still occuring, some from the past:
Flushing of the face and earlobes bright bright red
Blurred and double vision
Heat intolerance
rashes.. like hives on the face but flat on my neck, back, and chest
swollen lymph nodes
tender lymph nodes along with infections of groin lymph nodes
canker sores inside the mouth and gums
inflammation and pain of the roof of the mouth
Weight loss
Weight Gain
Loss of appetitte
Nausea
Diarrhea
Bloating and constipation
craving sweets and salts
Dry Skaley skin
horrible acne in my late 20's worse than when I was a teenager
Heart racing and palpitations
Anxiety
a Feeling of fullness in my throat and chest
upper adbomen tender to the touch
hypoglycemia
insomnia
larthargy
dizzy spells
confusion and slow cognitive function
white outs and black out upon standing most the time
horrible eggy and bile like burps that don't go away for atleast 10 or more hours
wierd cramping like pains that go from my upper adbomen/diaphram area down to my intestines
low libido
muscle twitching
tingling in my back and gums and face
frequent UTIs
joint swelling and pain in the lower back and legs
I have been seen by ENTs, Gastros, Allergists, herbalists, and neurologists and about 12 different GPs, a few psychiatrists, counselors, and psychologists.
Initially diagnosed with IBS and Anxiety and then since my doctor can't find anything else wrong with me: Chronic Fatigue Syndrome.
I have had blood tests rule out, Lupus, Lyme, Eppstein barr, Mono, RA, and a few other vitamin panels. All normal. I have had a CT scan of my kidneys done, normal. MRI done with and with out contrast of the brain and neck, colonoscopy, two endoscopies, barium sallow, and an gastric emptying scan. EKG, Echocardiogram,24 hour holter heart monitor also had a ultrasound of the gallbladder. All negative.. everything normal. Alsot forgot to add every doctor seems to suspect something to do with my thyriod so my blood gets drawn with that with every new doctor.. everything always comes back negative for that too. My recent neurologist gave me an EEG in which showed some abnormal brain activity for a mild form of epilepsy.
On two of my ER visits about 4 months apart they found blood in the urine without sign of an infection so.. they suspected stones. No stones found after CT scan even though my lower back did hurt, ran blood tests for kidney and liver function as well. Those came back normal too .
I am looking into seeing a endocrinologist as we speak. I need a referral and GP refuses to give me one.. I will get there though.
Thanks again for the warm welcome here. I am glad to be here.
Kristin
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**Kristin**
First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
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April 23, 2009, 12:42:26 AM
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Full Member
Gender:
Posts: 125
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Hello Kristin!  Sorry to hear about what your going through..and for 14 years at that! Like yourself, I had blood in my urine one time and they didn't find an infection or any stones either.  So I'm off to read up the rest of your symptoms, cheers! Jenny
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April 26, 2009, 03:41:59 PM
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Full Member
Gender:
Posts: 125
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Hey Kristin,
I read on your blog about how your taking the birth control pill, may I ask for how long you've been taking it? and what brands have you tried and are currently on?
Its because my symptoms started showing up right after I started taking a birth control called Yasmin.. I took Yasmin to regulate my menstral cycle, and I have a hunch it may be related.
About your skin yellowing, I have that too. Mine, though, is more like it's getting a darker yellowish colour. The pink in my skin is almost completely gone also. This yellowing of the skin is pretty much even throughout my whole body. There's no explaination as to why this is happening, because I haven't been outside for long periods of time, went tanning, etc. The skin on my hands and feet have gotten dry and skaly too.
Was edema ever a problem for you? Like especially after you drink alot of fluids, you notice that you don't pee most of it out normally?
Sorry for asking so many questions, I'm just trying to see how many of these symptoms we share.
Jenny
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April 27, 2009, 02:18:54 AM
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Sr. Member
Gender:
Posts: 263
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I know *sigh* I am still holding out that it DOES all have something to do with the endocronology system somewheres...
I forgot to add these symptoms as well to my massive list: Sensitivity to Light, pupils dialate slower than normal, cold intolerance.. worse than the heat intolerance. Poor circulation for as long as I can remember, feet and hands Always cold. Trouble getting up in the morning even when I get sufficient sleep, feel best at night or after 7pm or so.. Brain fog and word fishing, I often forget what I am saying mid sentence. I wasnt sure if I should just add those to my original list on here but that list is sooo freaking LONGG because its my entire list since age 13. Some of those symptoms have since gone.. hopefully NOT to return. ha.
Sometimes I wish this all was in my head.. *sigh* I just watched my muscles twitch from my left arm to my thighs to then next to my ear.. or maybe it was my ear. I don't know. I told my husband to look at the muscle twitching. He witnessed it.. he doesnt know what to do anymore either though.
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**Kristin**
First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
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