Discussions By Condition: I cannot get a diagnosis.

A True Story....

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: mommy cat
  • August 7, 2007
  • 01:07 PM

It all began like this……occasional flushing. After receiving a “flu shot” I “caught” the flu, regardless in 2005. I was an nurse working in a nursing facility and there was a severe case of the flu that year. There were units in our building “Quarantined due to flu”. I in turn, brought the flu home to my fiancee.
Since that episode, I had an increase in symptoms and worsening of the existing ones. Up to and including…flushing, diarrhea, vomiting, near syncopal episodes, stroke-like episodes and a feeling of being poisoned due to constant chills, fever, aches, pains, stiffness, swelling of lymph nodes and a slew of other complaints. Too numerous to list. Everything from sneezing to excessive gas…and everything in between.

When I originally approached my doctor(FNP), who often would get “offended” due to my inate habit of “self-diagnosing”, I was told I had peri-menopause. I asked “at 35?”. I was told…hence the term, peri…early…ok.

I then was told I had several things from Diverticulitis to Chron’s to IBS…due to the diarrhea but that didn’t cover the rest of my symptoms…?
I was also told that I had Carcinoid Cancer and attended Roswell Park cancer Institute where I has a slew of diagnostic procedures over the course of a weeks time. Again, misdiagnosis. No cancer…anywhere to be found.

I am not complaining, just stating facts. I was relieved to know that I did not have Carcinoid. Needless to say, it took it’s toll mentally and emotionally for I believed what I was told my the medical professionals who had been treating me.
I came home from Buffalo with a sadness beyond compare in my heart. I was disheartened recalling the Oncologist saying…”Well, it’s not Carcinoid” To which I asked”Then, what is it?”.
I was answered with a reply that noone wants to hear…especially from one of the top oncologists in the nation. His response was…”I don’t know”.
I came home and decided to take matters into my own hands. I began researching day and night for answers. I had been using ssymptom checkers on google. I had been entering facial flushing and diarrhea for these are the two symptoms at the time that I could not “chalk up” to something else.
I kept finding the same list of diseases. The only one that really matched my symptoms was Carcinoid Cancer…which had already been ruled out.
Then I prayed…to God…not for the answer, but for the right path. I told him that I would find the answer myself, I just needed to know where to look. A few days later, it hit me. I went back to my symptom checkers and entered nightmares and night sweats to my list of symptoms. Low and behold, I was directed to the hummingbird site. I knew I had ME...which the USA calls chronic fatigue syndrome.
When I read the list of symptoms, I cried, laughed, screamed, shook my head and pounded my fists, for I had found my answer…and it wasn’t pretty.
I then went back to the forum where I had posted for help a month before and added to my thread a post with my e-mail address and info on the hummingbird site. I then decided to see if maybe there was one other person in the whole world who might have my symptoms…someone with whom I could relate.
What I found was staggering…thousands on one website, all having the same/similar symptoms. It was overwhelming. So, there I began my journey. I sat everyday and every night…posting…posting…posting…to everyone with symptoms of ME. There were staggering numbers. Some took my advice and got their answers. Some refuted my advice and remain searching for their answers. Some got so upset at my insistence, that I was reported for “spamming” information and being too aggressive.
I did, however cause quite a stir in that forum and have made many wonderful friends…who share my complaints, symptoms and frustrations.
I have had a positive effect on many and many more to come.
We are deducing, sharing, comparing,caring,supporting and helping each other,daily. A gracious person in this forum recommended NAET/Bioset therapy to me. I have gone for 5 treatments and my symptoms remain 80% improved. I am heading back to work for the first time in a long time. My doc is even going to check out Bioset now that he has seen such an improvement in me!!
Anyone and everyone should attend this therapy...regarless of what your "diagnosis" is.
God Bless all of you....mommy cat
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