The old guy doc couldn’t believe how much better my hand was today. Me, neither! What a difference! 🙂 He says the only thing that would get better that fast with Indomethacin is gout. Ironically, my blood test shows uric acid smack dab in the middle of normal. It was 5.4 (normal is 2.5 to 7.5). He says the uric acid doesn’t even have to be elevated for there to be gout. Sigh….I hate stuff that’s not totally black and white. In the doc’s mind it is gout and my hand is getting better, so I will just trust that he is right. He says if I feel the slightest new twinge in my hand, get back to him ASAP.
My blood tests are always interesting and frustrating. There were 4 things too high, and 4 too low. But in actuality, I think one of the lows is a better low 🙂 Monday my hemoglobin was 10.7. In December it was 10.2….so I am getting better! Of course, normal is 12.1 to 15.9. The other lows are Mean Corpuscular Volume at 23.4 (normal 26.5 to 32.6), Mean Corpuscular HGB Concentration at 29.5 (normal 32.7 to 36.9) and Mean Platelet Volume at 5.8 (normal 5.9 to 9.8) But….those things are ALWAYS low. I don’t remember a time they were normal. One of the too high results is related. Red Cell Distribution Width is 17.1%, normal is 10.8 to 14.1). All those are to do with anemia. As long as I am not getting IVIg, they are MY “normal”.
Two of the highs are MY “normal” highs. SED rate is 60 (normal 0-20) and CRP is 5 (normal 0-.8). Those are markers of inflammation. I always am high. They are actually pretty good for me. In April last year, my SED rate was 81. Ooops! Last Februrary my CRP was 4. My MCTD is what makes the inflammation markers high. It has been high ever since I was diagnosed with RA at 18.
The erythrocyte sedimentation rate (ESR) reflects the degree of inflammation in the body. In healthy people, the ESR is low and it climbs with inflammation. It doesn’t point to any particular disease, but is a general indication of the amount of inflammation in the body. In lupus and polymyalgia rheumatica, the ESR often correlates with disease activity.
C-reactive protein (CRP) levels are an even better indication than ESR of the amount of inflammation present. In people with rheumatoid arthritis, if the CRP is high, it suggests that there is significant inflammation or injury in the body.
Both CRP and ESR levels are used to monitor disease activity and to monitor how well someone is responding to treatment.
My SED rate and CRP levels have provided endless discussions between doctors my whole life. I wish doctors would agree on things! Today’s doctor was alarmed to see them so high. I assured him they were normal for what’s wrong with me. He sadly shook his head.
The weirdo high blood test is for White Blood Cell Count. Mine was 11.37 (normal is 3.3 to 10.6). When I have obvious infections, it’s hardly ever elevated. The WBC test is sort of my nemesis. When I INSIST I have an infection, it’s low. Even when they see holes in my intestines and I have a high fever, it’s low. I take antibiotics and get lots better. Only later does it usually go up. I don’t know what’s up with that. It makes me crazy.
This doc just repeats over and over that I am above his pay grade and am too medically complicated. He says I make him feel inadequate. Truth is, I like him better than most because he is the kindest hearted guy you could ever imagine. I never feel like just a number on a chart with him. He cares about me as a person.
Since the gout started Saturday, and I ate cherries and drank cherry juice, that started my healing. Apparently the inflammation gets worse and that makes the body pee out more of the uric acid in self-defense. I found several studies explaining why blood tests don’t always tell the whole story.
I had a package of tart dried cherries on my highest shelf. I got them down. I am set for cherries a few more days 🙂 My hand just started hurting again. I smacked myself in the head. I am an hour and a half late for taking meds. Duh!!!! I am supposed to keep taking Indomethacin until next Monday. I sure as heck hope that’s the end of gout for this round!
I haven’t had much of a life since that pain started. Looks like a nice week ahead 🙂 Today was sunny. More 60’s coming. Sounds good to me!
Whoa! All hell broke loose 😦 When I woke up this morning, my entire abdomen was rigid. It was painful and other-worldly. Because of the pain meds and other unusual meds I have taken since getting gout, my intestines quit working. I have been doing Metamucil twice a day, but it just doesn’t work as well as Miralax. I can’t afford more Miralax. I think Metamucil just puts kinks and blockages in my guts 😦 I didn’t have time to deal with intestinal issues before my doc appointment, so waited until I got home.
Last night when I was craving salt, I made a package of ramen noodles and added nice, salty canned ham, chopped shallots, chives, and at the end, an avocado. It was perfect to get me salted up 🙂 Afterwards I burped and noodles and all came out. I suspected I was deep in gastroparesis territory and that confirmed it. My stomach wasn’t emptying and my guts weren’t moving. Sigh….
So, when I got home, I once again dug through my drug stash. I got out the laxative pills I bought for my colonoscopy a year ago. Nothing happened for hours. Then I got incredible gut cramps. I tried to stand up and could not budge an inch. My legs were tremoring and weak. Somehow the walker and I finally made it to the bathroom. My legs were buzzing and quivering like crazy. And the fasciculations! All over my face, inside my whole mouth and way down to the base of my tongue in my throat. Next thing I know, my neck becomes paralyzed and I can’t swallow. Then the back of my neck pops out in a creepy muscle spasm. My throat was almost closed shut. I was doing my darndest to stay as calm as humanly possible. There was no part of my body without quivers, fasciculations and spasms. My eyesight was diminishing quickly. I could barely think. Sweat was pouring off me. I wanted to swallow soooooooo bad! It was classic myasthenic crisis symptoms.
What to do? It was after 5, so no docs around. If I called 911, they would come in and find me sitting on a toilet. I couldn’t move. I had the cell phone on the walker seat, but wasn’t sure I could reach, dial or see. It was terrifying. I held onto the handicap grab bars for dear life. I won’t go into details about the gut distress. My butt was getting numb from the toilet seat. I couldn’t move and I couldn’t NOT move. At some point I was able to move and come back to my chair. I couldn’t lift my legs up on the ottoman. Too weak and shaky.
This whole scenario has been repeated for hours. Over and over and over. So many bad things happened 😦 The gigantic incisional hernia has a significant part of my intestines bursting out of the fascia and swelling just under my skin. There is a huge, hard mass as well as the ropy intestines. Until this happened to me, I wouldn’t have thought people could live through this stuff.
I am in major misery. And I thought the gout was bad! The fasciculations have stopped. I am still very weak, but hopefully the worst of the MG exacerbation is done with. I am not sure, though. I keep getting random bolts of total weakness. People like me should be in the hospital, under the care of an MG expert. This is dicey stuff. I need to call my neurologist tomorrow to check on the status of the IVIg insurance fight.
Whatever doesn’t kill me, makes me stronger, right?????????