Saturday, August 27, 2016

Yes, folks, she has a brain.

I missed a block party in my hometown today. I was much too weak and in too much pain to go, even on the walker. I'm making a lot of plans these days, but most of them are on a "just in case I'm strong enough" basis. I had a great dinner and game of Clue with a friend last night, so that was cool. I was planning to visit a church tomorrow (more on that later), but I doubt I will be up to going. I can barely walk at the moment.

Since I'm stuck at home, I'll go ahead and blog the results of my follow-up with Internal Medicine. TMI warning, as always. In a nutshell:

- my brain is normal as per CT scan (yes, folks, she has a brain!)
- my digestive system is low-functioning (this is why I always look pregnant, by the way), no cancer found in my upper GI tract, but I'm scheduled for an intestinal MRI on Monday due to concerns.
- extremely high amounts of potassium brought me back into the low 4s, but I really need to be in the low 5 range to have maximum mobility (which is much weaker than average to begin with, needless to say).
- I am finally on a prescription phosphorus supplement, and will return in one month to have my levels checked.
- Magnesium, sodium, and Vitamin D are currently normal, which is a feat that I don't believe has ever happened before, at least not simultaneously.
- The doc prescribed an antibiotic to try to force my stomach to contract. I'm not supposed to be on antibiotics, but since we confirmed that Reglan puts me in the ER with serious paralysis, and surgery for a gastric pacemaker is very high risk, we agreed that this was a slightly safer option. I'll start it after the MRI, and continue it only if I don't experience unmanageable HKPP symptoms.
- I was offered a social worker to help me manage my disability. I'm still deciding whether or not I'm going to go through with this, only because their policy is to come to my place instead of me going to theirs. Knocking on my door, uninvited, to ask me questions from a checklist every week is an anxiety trigger, and I actually felt better when I told the last social worker (2014) to close my file. So, I don't know.

Thanks for the love, prayers, well wishes, etc. always.

Sunday, August 21, 2016

Keveyis article that I may or may not have already shared

http://www.biopharmadive.com/news/Taro-keveyis-free-rare-disease-drug/418564/

I know I've mentioned it here before, but here's a short article about ‪Keveyis‬ being given to patients free of charge after lack of profit. One reason for the marketing downfall is that several of us with Periodic Paralysis were unable to tolerate the drug's potassium-wasting potency, which caused us to get worse instead of better. In my case, I'm already on very high amounts of prescription potassium, but it wasn't enough to supplement the loss that occurred on the drug. Anybody with severe Periodic Paralysis will tell you that even the smallest fluctuation of potassium in the bloodstream can affect us. If prescribing physicians aren't familiar enough with voltage-gate ion channelopathies to know how they work, don't expect them to understand how the drug works and how to compensate for the potentially catastrophic side effects. Doctors hear the word "Hypokalemic" and look up dichlorphenamide and think we're bonkers because they don't understand the condition nor the the way the drug manipulates the kidneys and muscle channels to prevent depolarization. A little education can go a long way, but when it comes to our rare disease, a great deal of (continuing) education and experimentation is required. Unfortunately, most doctors aren't up for that, and patients suffer as a result.

While I figure the change from over $100 a pill to free is a write-off for Taro, it's one that is helping patients who are benefitting from the drug. There aren't many, but the ones whose lives have improved are worth it. And for that, we sincerely thank them for their contribution. It's not something to be taken for granted in a country full of capitalist asshats like Martin Shkreli.

I'm still so disappointed that Keveyis didn't work out for me. But knowing my turbulent history with Periodic Paralysis, it wasn't the least bit surprising.

Monday, August 15, 2016

August 11 test results

I picked up my test results from the clinic today.

Phosphorus is still too low, potassium needs significant improvement, and kidney function has slipped again. In better news, after heavy supplementation (over 150,000 IU a week), my Vitamin D is finally in low-normal range for the first time in my adult life.

I will continue all scripts, my K+ dosage has been increased again and is now 200mEq a day, and I will have to keep searching for any possible way to bring phosphorus back into normal range.

I have a CT and Barium swallow test at the crack of dawn Wednesday.


Thursday, August 11, 2016

Internal Medicine August 2016

I spent the afternoon at internal medicine clinic. They administered emergency potassium because it was 3.7 and I could barely lift my body. (Feel free to visit previous blog entries if that number makes you skeptical, as I've already explained why the 3s are a very bad place for me.)

I had the usual panels of blood work (Stat K+, BMP, Mag, Phos, Vit D), and based on results vs medication doses, we agreed again that my body isn't absorbing my diet or supplements well at all. No solution known.

New GI and CT scans are being scheduled, assuming insurance approves, to monitor my choking and swallowing issues and double-check my head since the migraines and auras are so severe.

I met the on-staff social worker for the first time, who is getting me back in the door with social services, as well as arranging free transportation to future doc appointments that are scheduled in my county. That'll be interesting.

The social worker and Dr. B both assured me not to worry about my impending SS Disability review. I don't know why it has worried me so much, but it has, and I'm relieved to know they have my back. My disability is dead obvious, but my anxiety loves to play worst case scenarios over and over in my head. I'm sure social services will probably offer therapy, and I'll accept. I think everybody should seek counseling at some point in their life, even if only to confirm that it's unnecessary. I dare say nearly everyone could benefit from it. At any rate, I am not considered a severe case, according to the social worker, but I certainly have enough on my plate to qualify for services. We'll see what happens.

I'll post my test results when I know them, and I'm scheduled to go back in two weeks for follow-up tests.