Thursday, May 15, 2014

Symptoms and latest news

I decided to post my symptoms for each disease I have so that maybe you can see what I go through on a day to day basis.  Please realize some days are better than others.  Some may be going through the same thing and some may be surprised at how much I have to endure.  As for me, I have to take one day at a time.

Gastroparesis:   Heartburn, nausea, vomiting undigested food, feeling full quickly when eating, abdominal bloating and pain, poor appetite, weight loss. Thankfully, I have not had vomiting for 9 months now and my weight has settled.  I have lost over 60 lbs with this disease.  I am 125 lbs and holding strong.  I can only eat approximately 1 cup of food at each serving.  Since I have no gallbladder I have to control my fat intake.  Muscle loss due to malnutrition.  Constipation due to low fiber diet. 

GERD:   Feeling food is stuck behind the breastbone, heartburn, nausea, bringing food back up (reflux), cough, difficulty swallowing, hiccups, hoarseness, sore throat.

IBS (Irritable Bowel Syndrome): Abdominal pain or cramping, bloating, gas, diarrhea or constipation, pain that radiates from around belly button to back area.  Sometimes the only way I can ease some pain is by using a heating pad.

Hashimoto Thyroiditis: Fatigue, sluggishness, increased sensitivity to hot and cold, constipation, dry skin, hair loss, muscle aches and weakness, always extremely tired no matter how much sleep I get.  Heart palpitations. 

Primary Adrenal Insufficiency:  Muscle weakness and fatigue, weight loss, and decreased appetite, feeling faint at times, salt craving, darkening of skin, nausea, diarrhea, muscle pains, body hair loss. 

Secondary Adrenal Insufficiency: Dizziness, weakness, tiredness, nausea, decreased appetite, muscle and back pain.  Hair loss, brain fog and can't think clearly at times.  Night sweats. 

Empty Sella Syndrome: Headaches.  My pituitary gland has no mass and is flattened.  Therefore causes problems for my adrenal glands, ovaries, and thyroid. 

I have been tested positive for ANA (Antinuclear Antibodies) It basically means that my immune system is attacking my own cells and tissues.  I know that a lot of my symptoms are repetitive but not knowing which disease causes what is extremely hard for me.  For example: my major back pain and abdominal pain could either be caused by my stomach disease or I could be going into an adrenal crises.  I don't know how to determine the cause with similar symptoms for each condition I have.  I have also been dealing with massive amounts of leg pains.  Sometimes to the point where I cry out in pain if someone touches my legs.  I have been referred to a Neurologist. Until then I am continuing to take robaxin which really doesn't help much.      

I had a one and a half hour conversation with two of my doctors regarding my Gastroparesis and abdominal pain.  I knew at one point I was going to have one of my doctors tell me this, but wasn't expecting it to be so soon.  He informed me that I need to highly consider a career change.  He informed me that it is causing too much stress and havoc on my organs.  I knew I was really stretching myself at work and knew I was limited.  I have noticed for quite some time now that when I did physical work it would cause me lots of abdominal pain.  

I had a recent endoscopic with botox and balloon procedure to stretch out my pyloric sphincter.  This was my second time having this procedure done.  My first one helped with 10% pain relief.  Doctor seemed excited that it helped that much.  Well it has been a week from having my second procedure and it has helped tremendously!  How exciting!  Now don't get me wrong, I still have IBS and Gastroparesis but having no spasms from my pylorus is totally awesome!!  I know the botox and balloon procedure is only temporary but I am so hoping having no spasms lasts for a couple of months or more!  Good news right?  Well I also received bad news after my endoscopic procedure.  Yep, never fails, sad to say.  My doctor found white spots throughout my entire esophagus and pylorus and I now have a hiatal hernia.  A biopsy was taken and should know exactly what the white spots are.  My doctor is thinking it is esophageal candidiasis disease possibly due to having to take steroids for my adrenal disease and the lack of immune system.  Until the biopsy results come in I have not received any additional instructions.  Whatever I have, I need to inform my endocrinologist to discuss proper treatment with extra dosages of hydrocortisone (cortisol) for my adrenals to kick in to help fight off the infection.  If its not one thing its another right?