Okay, I've waited a really long time to post any medical updates about me, because one it's been a lot to take in, and two I was trying to wait until I had more information to give, and three I've been so damn busy lately.
So to recap on some earlier posts...
Given all of my symptoms and earlier blood tests, my primary physician thought it logical to send me to the rheumatologist to be further tested for Lupus. After talking with said rheumatologist and an ultrasound on my hands he felt the need to do further testing because he also felt it could be lupus. In the meantime my hair loss seemed to get a little better for about a week and then all of a sudden it got A LOT worse. My stomach pain grew worse as well. After waiting for what felt like forever, we go back in to talk with him about the results. There were quite a few red flags on my blood work but the lupus panels they ran were all negative. It was disappointing to hear that he didn't find anything. I don't want lupus, or any disease for that matter but I just want a diagnosis so I can try and move on.
Here is a list of the things that were flagged in the blood work and urinalysis -
Vitamin D- LOW
AST/SGOT- LOW
BUN- HIGH
RDW/CV- HIGH
RDW/SD- HIGH
Urinalysis Results
BILIRUBIN- SMALL AMOUNT
KEYTONES- TRACE AMOUNT
BLOOD- LARGE AMOUNT
LEUKOCYTE ESTERASE- SMALL AMOUNT
RBC- LOW
After asking him a list of questions and concerns about the flagged results, he dismissed them because he felt they were irrelevant. I had a rash on my face that day. It was hot and super itchy. I asked about the rash and he said he felt that there was something immunologic-ally wrong but he didn't know what it was. He gave no real guidance as to what the next step should be. I honestly think this is why I was so upset about the whole thing. I just didn't know what else to do. I initially really liked this doctor, but as soon as the Lupus tests came back normal, I felt like he just wrote me off. Those irrelevant flagged blood tests mean something to me. Why was there so much wrong? Are they connected t something else. Kidney problems? Liver problems? So I wrote my primary a message on my portal and asked if I could get a referral to GI and Neurology. He gladly obliged. The next morning when I woke up my face was super red, bumpy, and omg itchy. It hurt to the touch too. The next day I went in to my primary's office to see what was up with my face. Dr. Benson (who is also really awesome y'all) did a skin scrape, and ruled that it was most likely rosacea. She put it to me this way, if the medicine works then it's probably rosacea, which incidentally is also autoimmune. I gladly took the face gel everyday, and it worked. If I'm in the sun for too long or without sunscreen on, my face almost instantly turns red. Sweat BURNS my face really bad.
My stomach problems seemed to only get worse with each day that passed. It has now gotten to the point that I can no longer eat OR drink anything without having pain. On May 31st I had my next follow up with my primary Dr. Hyson. He was concerned about how bad the pain had become in my stomach. I explained that I only go to the bathroom once, "maybe" twice a week, but when I do go it is diarrhea. Very odd. Just touching an area would make me squirm in pain. He was also concerned about the various skin rashes on my legs. My other pains haven't gotten much better with the cymbalta he started me on a couple months ago, so he has recommended that I start physical therapy. Not sure when I'll ever be able to squeeze that in having all 4 kids at home for the summer.
The next day I had my first appointment with my Gastro doctor. He agreed with Dr. Hyson that he felt there was more to what was going on with me. We talked briefly about the possibility of it being Crohn's Disease, Celiac Disease, or Ulcerative Colitis. All of which are autoimmune diseases. So on July 12th I will not only have an endoscopy but also a colonoscopy and take some samples for biopsies. I no longer want to speculate about what is going on with me immune wise, but everyone agrees it's definitely something. If it is crohn's diease, it really could explain every last one of my full page symptoms. Like I said before, I just want to feel better. In order to feel better though, I need a diagnosis. Those are apparently hard to come by these days.
Between last night and today, I'm a lot worse. I can't keep anything down or "in" for that matter. I've thrown up 3 times today and I have nothing but diarrhea. It has officially gotten to a pretty embarrassing point. Nothing is really controlled. All of my joints are hurting. I have a horrible headache and I can barely keep my eyes open. When I get up to walk, I cannot stand up straight. My hair loss again had slowed down, but has started to get a bit heavier now. The weather isn't helping things either. These tropical storms are probably playing a big role in my joint pain. It's getting hotter and hotter out. Which means the headbands I wear to conceal my hair loss is making me even hotter. When I'm not wearing my headbands though, I look like a baby duck. It's a lose lose scenario. I've had a great amount of energy the last couple weeks and I was able to get a lot done. I just hope that this flare of whatever goes away fast. I have a lot of fun things planned for the family while my mom and dad are in town.
All in all I have now seen an,
ENT
Neurologist
Cardiologist
OBGYN
2 Primary Care Physicians
Rheumatologist
Gastroenterologist
I'm seeing a new Neurologist on the 15th
I'm being referred for Physical Therapy
and I will need a new dermatologist
This puzzle is officially broken and still missing pieces.
I don't know how I keep everything straight anymore.
Here's to getting it back together....
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