Today, I found enough anger and determination to wage war in the doctor's office if he wouldn't listen to me or try to help me. I don't want to be written off by anymore doctors. So, I printed out the picture of before and after me, proving weight loss (picture below). I also brought the relaxation techniques that the Mayo psychologist gave me and explained what the Mayo doctor said about anxiety being the root of my problems.
I was able to show him all of my documents (I brought blog entries that he read too), including my weight loss:
The top picture is from 2011 and the bottom picture is from a week ago.
My GI doctor started laughing and told me that I had been on Celexa and Xanax for the past year and a half that he's been treating me along the way and he never witnessed me acting out of the ordinary, only being ill. He knows that I've been treated for and I've been managing my anxiety because he has the records, and like I said before, I've been under his care since he diagnosed me last year (March). Additionally, he read my blog entries that I brought and I told him that writing has always helped me overcome overwhelming things. I told him my blog had 19,000 views and he told me that was impressive. I explained that I document tests because there's not many resources online about them. He agreed with me and told me I was doing an excellent job.
After all of that, the GI told me that he doesn't think anxiety is the issue. He laughed at that diagnosis. Then, he stopped laughing and told me that doctor probably said that because he didn't know how to treat me and didn't want to deal with me anymore. Sadly, I think he's right. He apologized for sending me there. He said that he really thought I would receive treatment there since the Mayo Clinic has a reputation for having the best specialists for GI/GP issues.
He said to me that I will have to deal with this illness the rest of my life. I honestly was hoping to hear some good news about treatments. I know there's not a cure, but there has to be something they can do to decrease the nausea and vomiting so that I can get my life back.
I told my GI about my Mayo test THE pH PROBE. When I told him the results of that test, he was just floored. He was just sitting there in shock for a moment. Telling your GI that over a period of 24 hours that you had 56 recorded episodes, 44 of them vomit ... will bring strange looks to their faces. He gave me a look of pity and condolence all at the same time.
The Mayo doctor recommended a CHRONIC LIVER TEST as well as a PELVIC FLOOR TEST. The Mayo Doctors recommended exercise as well, cardio for 30 minutes. If I could exercise like I want to, I would be hiking. I told the doctor about my horse riding lesson planned for Thursday and he thought that was good enough exercise for now. I'm also doing yoga but it's hard to do when you're really nauseated all of the time. One of my fraternity brothers wants to take Yoga classes with me. I'm going to search around for beginning lessons somewhere so that we can go together. She'll be my motivation to kick my butt when I'm sickest to go. Yoga has always relaxed me. I used to take it at my previous college before because our student fees paid for it - so it was completely free to us. At my current college, you have to pay for it - but I'd rather pay to take it somewhere else. I told my GI doctor that I was worried about vomiting during a yoga session. This lead to the stomach surgery conversation.
My regular GI doctor asked about the status of the NISSEN FLUDOPLICATION. I told him that Mayo refused to do the surgery because I'm vomiting too frequently and too violently, that I would undo the surgery.
The Mayo doctor recommended for me to follow up with my regular GI doctor for extra tests. He wanted me to have a CHRONIC LIVER DISEASE and PELVIC FLOOR TESTING.
My Current Symptoms
I told him about my newest symptoms which include, but not limited to:
*Stumbling around while walking but no dizziness.
*Having blackouts of entire days that I don't remember. For example, I can remember Saturday but I have to look up what I did other days on Facebook.
*Dehydration.
*Cannot urinate unless I bear down really hard.
*Having issues sleeping because of frequent vomiting.
*Vitamin deficiencies in vitamin B-12, vitamin C, and vitamin D. All of the levels are extremely low.
NOTE: Vitamin B-12 injections are on back order.
*Seeing black spot.
*Becoming hypoglycemic because nothing stays down.
*In a LOT of pain - blood pressure is still high. The nurse said my heart was racing.
*Friday, my blood pressure was 184/93.
*I'm immune to acid reflux medications.
The Treatment Plan
My regular GI doctor didn't think the chronic liver test was an issue and refused to put me through it. He also gave me a B-12 injection in house, which helped my energy level a lot. He said that confusion, disorientation, memory loss, and all of those symptoms were from vitamin deficiencies and malnourishment.
Next, I talked to him about BOTOX THROUGH ENDOSCOPY. He agreed that was worth a try, and I'm scheduled for Botox on June 12th!
He is sending me to a pain management specialist to deal with my GP. He said there are pain patches and things they can give me since I have issues keeping food/liquids down.
He is also going to follow up on the Mayo doctor's recommendation of Pelvic Floor Testing.
Additionally, he is also going to schedule an appointment for me to get TRIGGER POINT INJECTIONS. I have had these done for my back my by my spinal cord stimulator. I didn't realize how tight the muscles were until they injected all of the trigger points. My muscles relaxed instantaneously. Every doctor makes up the trigger point cocktail differently, I learned through my stimulator doctor. Usually, it's lidocaine (numbing medicine), cortisone (steroid for inflammation), and some sort of muscle relaxer. It will definitely help some of the muscles I've hurt while vomiting in my abdomen.
The GI also said that if the symptoms I was having progress (seeing spots, etc), that I need to see a neurologist. I agree with that and will follow up after I give the B-12 a chance.
