Sunday, October 26, 2014

A Bottle of Lies

Greetings! Let's talk about Magnesium.

(From the Wikipedia page. Don't worry, the references are there.)

"Magnesium is a vital component of a healthy human diet. Human magnesium deficiency (including conditions that show few overt symptoms) is relatively rare although only 32% of people in the United States meet the RDA-DRI; low levels of magnesium in the body have been associated with the development of a number of human illnesses such as asthma, diabetes, and osteoporosis. Taken in the proper amount, magnesium plays a role in preventing both stroke and heart attack. The symptoms of people with fibromyalgia, migraines, and premenstrual syndrome are less severe, and magnesium can shorten the length of the migraine symptoms.

Intracellular magnesium is correlated with intracellular potassium. Magnesium is absorbed in the gastrointestinal tract, with more absorbed when status is lower. Magnesium competes with calcium in the human body, in this way it actually keeps calcium in check. However, this can cause a calcium deficiency if calcium levels are already low. Low and high protein intake inhibit magnesium absorption, and other factors such as phosphate, phytate, and fat affect absorption. Excess dietary magnesium is excreted in feces, urine, and sweat. Magnesium status may be assessed roughly through serum and erythrocyte Mg concentrations and urinary and fecal excretion, but intravenous magnesium loading tests are likely the most accurate and practical in most people. In these tests, magnesium is injected intravenously; a retention of 20% or more indicates deficiency. Other nutrient deficiencies are identified through biomarkers, but none are established for magnesium.

The UK recommended daily values for magnesium is 300 mg for men and 270 mg for women. Spices, nuts, cereals, coffee, cocoa, tea, and vegetables are rich sources of magnesium. Green leafy vegetables such as spinach are also rich in magnesium as they contain chlorophyll. Observations of reduced dietary magnesium intake in modern Western countries compared to earlier generations may be related to food refining and modern fertilizers that contain no magnesium.

Numerous pharmaceutical preparations of magnesium, as well as magnesium dietary supplements are available. Magnesium oxide, one of the most common forms in magnesium dietary supplements because it has high magnesium content per weight, has been reported the least bioavailable. Magnesium citrate has been reported as more bioavailable than oxide or amino-acid chelate (glycinate) forms."

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Prior to adding a supplement, I was having frequent muscle spasms and charlie horses. A muscle in my neck pulled so hard one day, I nearly passed out, started vomiting, and ended up in the ER. At times my leg muscles would contract so hard for so long, I couldn't extend my legs to put them on the ground for hours. It was excruciating. Add migraines and lower digestive muscles crawling at a snail's pace and you have yourself a pretty miserable existence. Mag has been a life-changer for me, but it's been a pretty daunting task to find the right kind of supplement and the right dosage to balance out my chaotic potassium shifting and contradictory medications. Magnesium Oxide turned out to be worthless due to low bioavailability, but Citrate in pill and powder form seemed to be effective. Finding the ideal dosage has been the challenge, and I'm still working on it.

My doctor suggested I try Milk of Magnesia instead of Citrate, so I obliged. Unfortunately, I had to give it the boot within a week, as I basically couldn't leave my house thanks to the waves of pain crashing onto the shores of my abdomen like a Category 3 hurricane on Dauphin Island.

I love similes. Don't you?

Humor is the only way, people.


You're a big fat liar, Phillips.


Anyway, back to my Mag Citrate for now. No offense those who suggested it, but if I'm going to feel like I'm in labor, it would be nice to have an actual baby in my arms at the end of the day.

I now return you to your regularly scheduled program. :)

Monday, October 20, 2014

Local Clinic Update 10/20/14

I woke up feeling pretty horrible. Trouble breathing, felt like something was sitting on my chest, and the usual HKPP weakness, but a little worse. I ended up dozing for as long as possible, then forced myself to get up and get rolling to my local doc office. Lots of blood taken, and over a two hour wait, but as usual it was worth it. My doc is great. My strange condition is interesting to him and he seems to enjoy talking to me, to the point that he picks on me like we're friends and we have a laugh. Today in reference to low Vitamin D, he joked that I need to be thrown out into the parking lot with no clothes on to soak up the sun. That produced a belly laugh in me that I've yet to completely shake two hours later. Sometimes, a friendly and upbeat bedside manner can make a huge difference, even in the face of a no-win medical case. Everywhere I turned, I used to deal with skeptics treating me like a lowly idiot who couldn't possibly know what she's talking about. Now I finally feel like I have a collaborative team - listening, learning, and striving to keep me going. Thank God.

I had a lot of labs, and should have the results tomorrow or Wednesday. We're checking vitamins, magnesium, and doing the usual basic metabolic panel. My stat potassium was 4.4, which was an improvement from renal clinic in Jackson. I had taken 200mg Inspra prior to the appointment, so I believe I have that to thank for it. The potassium level goal is still somewhere in the low fives, as that is where I functioned best years ago. Hoping I'll get there again someday, and somehow keep it there.

I spoke with him about the possibility of sleep apnea. He said there is a new clinic in a nearby city, and he believes they take Medicaid. Touchdown! I'm being referred.

I've been having significant issues with my bladder since beginning diuretic therapy, and my doctor sympathizes because he has the same issue (he gave me all the TMI, bless him). He has been trying to get this under control for me since the day I met him. I have samples of a drug called Vesicare to try. So far, anti-spasmatics have resulted in paralysis, but maybe I'll get lucky with this one. I'll give a report in a few days.

I'll return to the clinic next Monday and the following Monday for potassium labs. Otherwise, I guess my next appointment will be with a sleep specialist in a few months.

Reminder


The Battle Against Periodic Paralysis Article - New Location

Someone uploaded my Yahoo article on a PDF site a while back, which turns out to be a good thing since Yahoo shut down Voices and erased all freelance work. I've been wanting to find a new place to submit it for publishing, but this will do for now.

Those who have shared my article over the last 2.5 years, please feel free to replace the bad Yahoo URL with this one. It has been corrected in my sidebar as well. Thanks so much.

The Battle Against Periodic Paralysis


Sunday, October 19, 2014

A blog rant, humanity, and the state of medical care

I wanted to share this blog post from a lady who had an unfortunate and very familiar experience with emergency care. Language alert for the easily offended.

http://letsfeelbetter.com/urgent-clinic-doctor-fail-i-dont-even-care-if-you-google-it/

I've been there. I've been in an emergency situation at the mercy of people around me, only to be mocked, mistreated, and misunderstood. It happened for years. I have been told of so many nightmares of people going through this kind of shame in medical care, and while it's nice to know I'm not alone in my battles, it's sad and unacceptable that this is still so common. I'm glad Ilana is telling her story. More patients need to put the truth out there, no matter how ugly that truth may be. Sometimes, shouting is the only way to be heard.

Doctors and Nurses: if you want to do the world a tremendous injustice, go ahead and assume every young person who rolls through your door is a drug seeker. Go ahead and assume they're being overdramatic and that their symptoms are exaggerated. Go ahead and assume that just because you haven't heard of it, or have never treated it, it must not be valid. Go ahead and do harm, if you dare. Just remember this: your paranoid and uninformed assumptions don't make you smarter or more superior. They only make you a closed-minded jackass.

I struggle greatly with the state of the world. I've learned that where there is good, there is bound to be bad. It is inevitable in all of us, as humanity is deeply flawed. The way I see it, if people want to screw up their own existence, that's their business. But when someone else's well-being is at hand, humility and willingness to accept education, ideas, and possibilities go a very long way. It can save lives and livelihoods. I believe it has saved mine.

My heart goes out to every patient who has lived through these scary and frustrating moments. It took a life-threatening decline in my condition for people to finally listen to me and take me seriously, and I can't help but wonder what my life would be like had I received the care I sought unsuccessfully for 20+ years. At any rate, I am very thankful that I have now found a team of physicians who are in my corner and are doing what they can to help. I wouldn't trade them for anything. I only wish to God I had found them sooner.



(cross-posted to my personal blog)

Wednesday, October 8, 2014

Fall MDA and Renal Clinics

Met a new doc at MDA. He was super nice, and seemed to know a good bit about HKPP. He documented my updates: Mom's death, my hospital stay in June (more on that later), and my loss of strength and proximal muscle tone. My arms were very weak, but leg reflexes were slightly more responsive than usual. He reminded me to eat low-carb, recommended vitamin B2 for my migraine, told me to surround myself with all things happy and try to stay distracted from my circumstances. He's one of several docs who have said this over the last 6 months. I'm a realist, but escapism is important when you're trapped in a broken body and stuck with a life and future you cannot control.

My renal doc saw me the same day. We discussed my potassium level, weight gain, breathing and sleeping problems, chronic pain, and Mom's death. He wants me to find a sleep specialist anywhere in Alabama who will take me. He believes I have sleep apnea. We reviewed test results and noted the general wackiness of my kidneys. We had a chat about my latest meds and symptoms, and the fact that I am needing to move back to Mississippi so I can continue to receive care there. He said he will always do whatever he can to accommodate my schedule because he knows how far I'm having to travel right now. This situation is a nightmare, but I always leave feeling a lot better emotionally after talking to him. I'm an introvert with chronic pain and anxiety, but he has so much patience with my moodiness and awkwardness. Best doctor ever.

New meds added to the pile: spironolactone 25mg titration, vitamin B2

Orders: potassium test in a few weeks (to be done in Bayou La Batre)

Appointments: Back to back clinics again - April 14th - and may God bless them in advance as that is the 1st anniversary of Mom's death. Might be a hell of a day.

I believe wholeheartedly that my physicians at UMMC have sustained my life, and I hope to continue to receive care from them for as long as possible.