Thursday, October 18, 2012

My story

So I have posted a few blogs lately and realized I have never really posted my story. I am 28 years old and have led an extremely interesting life. I graduated from Brigham Young University-Idaho in 2006 with my bachelors in communication and from Southern Utah University in 2011 with my masters in professional communication. I love being with my family especially my nieces and nephews. I have had many grand adventures over the years from camping to triathlons.

I have also had my share of odd medical occurrences over my life time. I had seizures as a child that disappeared by the time I was in kindergarten. I caught viruses easily growing up. I had severe anemia when I was 19 which resulted in me fainting in a mall. I ended up with a fractured skull and subdural hematoma. I had my tonsils out when I was 21 which was the result of a severe infection. In 2008, I was diagnosed with asthma which gets difficult at times.

Things started getting medically weird when I was 26 and in grad school. I ended up going to the emergency room one night with chest palpitations and the feeling of racing heart. I was shaky when I get there but was released after a few hours with a holter monitor.  The holter test showed sinus tachycardia of unknown origin. An examination by a cardiologist showed a nodule on my thyroid, which he thought to be the cause of tachycardia form the nodule pressing on my trachea. The theory was confirmed and I had part of my thyroid removed in May of 2011. I am able to deal with the lack of thyroid hormone with only 75 mg of Synthroid.

The fall of 2011 was good for me. I was teaching adjunct at Utah Valley University, and working for two companies doing advertising and public relations. Then I started experiencing some neuromuscular symptoms in December. I had a virus at the end of November. By mid-December I started having muscle cramps and aches. I thought maybe it was just lingering symptoms from the virus.


Things got considerably worse in January when I couldn’t move my feet and was experiencing marked weakness. I went to my general physician who was the first to suggest I might have Guillan Barre. I was able to make an appointment with a neurologist two days latter.  I was having trouble balancing as a walked so I had to use a crutch that we happened to have around the house. I went to Dr. B that morning where he agreed that I might I have Guillian Barre. An EMG showed evidence of demyelination in my lower legs. I was admitted to the hospital. By the time I started IVIG treatment that night I can’t move my feet  and was supper weak in my legs. I also have extreme pain in my lower back, I continued with a total of five IVIG treatments and was able to make some progress with walking with the aid of a walker. There was some doubt to the diagnosis of GBS since there was not elevated protein in my CSF. I spent a total of 7 days in the hospital. I was lucky as the paralysis was arrested before it got above my waist. 

It's been a tough road since. I made some initial recovery, but in April I started to go downhill again with weakness, body jerks, muscle tightening, pain, and difficulty walking. I had urinary and bowel problems along with mild swallowing weakness. I have trouble sleeping through the night from the abnormal muscle tightening, pain, stomachaches and regurgitation. So I was referred to a new neurologist. After tons of tests she referred me back to my doctor with no answers. She did suggest physical therapy. I had had some in the hospital, but didn't continue it when I was released because of the doubts about the diagnosis. 

The physical therapy has done wonders for me. I have my strength for the most part back. I am still lacking the endurance. My neurologist, Dr. B, has found that I have abnormal EMG, mild dysmotility, and high levels of pyruvate. Some clues but no answers. He's not giving up on me though. 

So here is my symptoms right now:

Fatigue
Muscle pain
Ringing in the ears (only when I crash)
Tingling
Abnormal muscle tightening
Dysmotility 
Stomach pain
Regurgitation and reflux
Cold intolerance
Headaches
Migraines

The current theory is that I had Guillian Barre which has caused some mitochondrial issues to emerge. So we are currently treating my symptoms with the Mito cocktail and it seems to be helping. 


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