Hello All,
One of our members wrote the following post and blog. I wanted to share it and Julie graciously gave her permission for it to be posted on our PPNI Blog. Thank you Julie for the kind words and for sharing your story with you. We are so happy that we have been able to help you and your family.
Guest Blog Article from Julie Nielsen Cabitto
I wrote a blog post about my story w/ PP if anyone is interested. It is also a thank you to Susan Q Knittle Hunter for helping me understand better. I have worked on two family history blogs for awhile. A lot of friends asked me to start a blog about how I deal with day to day stuff with me & my kids having health problems. I recently started that blog. (Note: I do feel amateur) My health slowed me down from posting as often as I wished. No adds, just me sharing what people ask me a lot about. I will write a review on Amazon very soon for Susan's books. Here's the longer version to my friends, family & any of you wanting to see. (post today: 17 Jun 2015)
Wednesday, June 17, 2015
Trying to balance my
life-Periodic Paralysis!
Throughout the last 2 years,
whenever I had really bad days, I went to read stories or books about people
with mobility handicaps. Especially paraplegics, because I often test paralyzed
from the waist down. I don't read them to feel sorry for myself, or to convince
myself it could be worse. I have only one motive: to look for ideas on how they
adapted to life, to see how they accomplish day to day stuff. About 2 months ago
on one of my really bad days, I saw a book about periodic paralysis, written by
Susan Q. Knittle-Hunter and her husband Calvin Hunter. I was intrigued because
my neurologist said 15 years ago my body looked and acted like Periodic
Paralysis. It was the first thing my doctor suspected. He was very surprised
when my potassium levels and EMG test were normal. So it was dismissed that I
didn't have that. But I figured since my body was so similar to it, I might get
some ideas. I downloaded the sample onto my kindle. I was so amazed, I knew I
wanted to buy a copy! Usually I get my books on Kindle, but this time I wanted
a paperback book to write in, notate and easily show my family. The first thing
that amazed me, was Susan said many people have normal EMG's and normal
potassium levels in between episodes. That was the only two reasons I wasn't
diagnosed with it!
I spent a few days reading all I could in the book, on the website, and other websites. I watched videos of people having episodes. Their episodes all looked like mine! I decided I needed to compile some evidence to convince doctors. This is really rare, estimated 1 in 100,000, according to NIH. I thought of 8 ER/hospital visits that my potassium could have been really low, based on symptoms I was now realizing were related to severe K+ (potassium) deficiencies. I got back lab reports on 24 visits. The crazy thing is, my potassium was only checked during 2 hospital visits! My neurologist told me that because I'm considered a "neuro patient" with my complicated migraines, spasticity, mobility issues, had a TIA and probably have petite seizures, that my K+ should always be checked as a standard hospital lab. I created a chart with the date of all labs I had records for, the reason they were asked for, if they checked K+, and the K+ results. Out of 29 labs (during abt 15 years), my potassium was only checked 8 times! Three times by a doctor which K+ was a routine lab for him. Of the 8 labs, half were low enough to be called hypokalemia (low potassium, 3.5 or lower). I also discovered that the DNA tests from places like Ancestry.com and 23andme have shown genetic mutations on a few known chromosomes for Periodic Paralysis. I ordered a test and recently got my results, showing I do have those same DNA markings. There is a 500$ genetic test, just for Periodic Paralysis, but I wasn't ready for that cost. (not covered by insurance)
I spent a few days reading all I could in the book, on the website, and other websites. I watched videos of people having episodes. Their episodes all looked like mine! I decided I needed to compile some evidence to convince doctors. This is really rare, estimated 1 in 100,000, according to NIH. I thought of 8 ER/hospital visits that my potassium could have been really low, based on symptoms I was now realizing were related to severe K+ (potassium) deficiencies. I got back lab reports on 24 visits. The crazy thing is, my potassium was only checked during 2 hospital visits! My neurologist told me that because I'm considered a "neuro patient" with my complicated migraines, spasticity, mobility issues, had a TIA and probably have petite seizures, that my K+ should always be checked as a standard hospital lab. I created a chart with the date of all labs I had records for, the reason they were asked for, if they checked K+, and the K+ results. Out of 29 labs (during abt 15 years), my potassium was only checked 8 times! Three times by a doctor which K+ was a routine lab for him. Of the 8 labs, half were low enough to be called hypokalemia (low potassium, 3.5 or lower). I also discovered that the DNA tests from places like Ancestry.com and 23andme have shown genetic mutations on a few known chromosomes for Periodic Paralysis. I ordered a test and recently got my results, showing I do have those same DNA markings. There is a 500$ genetic test, just for Periodic Paralysis, but I wasn't ready for that cost. (not covered by insurance)
My next bit of evidence was to do tracking. I charted how I felt for a month, and which neuro things were affected. I got some liquid ionic potassium, a bunch of avocados and sweet potatoes. (Which are quite high in K+.) The first day tracking, it was my second day of a bad migraine. That migraine caused me felt so sick with vertigo, nausea, my eyes were affected and my whole body ached as if I had the flu. I saw a post on Susan's face book group. Someone posted the question "how much potassium do you take to fight migraines?" I could not believe this possibility even existed! I immediately ate a whole avocado (abt 975mg) and took 99mg of ionic potassium. Within 10 minutes I could feel my migraine stopping better and faster than any migraine med I'd ever tried! Twice more the symptoms started back up, so twice more I took 99 mg of potassium and ate potassium rich foods. The next morning after I woke up and stretched, my fingers and legs had twice the strength of the day before. Over the next month of testing, going by my feeling of symptoms, I found I averaged 500-600mg of liquid ionic K+, plus an avocado daily (raw, nothing on it, abt 975mg K+), and my neuro stuff stayed away. I could feel stuff start to flare 3-4 times a day, every day. But the symptoms always stopped within minutes of taking the K+. (A recent lab showed I was not taking too much K+, but rather I was finally getting balanced.)
Most of my life I've had severe allergies to many things. Since I was a teenager, if I tried to stop Allegra for more than 2 weeks I got a respiratory infection. I found that the two meds I took lowered K+ levels. I had just spoken to my doctor about stopping them because they didn't seem to be working anymore. He agreed it was safe to stop, so I did. I've also had severe vitamin deficiencies since I was young. I've been taking 10,000 IU of vitamin D3 daily but could not get above 25! I got several labs over the last 4 years to make sure I wasn't taking too much D. I just kept showing up deficient in D as well as several other vitamins and minerals. I saw a gastro doctor who specialized in nutrition. She said my vitamin issues were much more than being celiac. Especially because I never cheated, and it's been over 5 years of no gluten in my system. She apologized for not being able to find the source of the absorption problem.
I recently saw my neurologist. I showed my lab summary sheet. He was amazed at my drastic improvement in only one month, that I stayed so well for a month and I went a whole month without migraines, a record for me! He ordered a slew of labs. He wanted to double check I was staying in safe range for K+ and not going high. My K+ was normal, and for the first time ever all my labs showed normal range, no deficiencies except B12! I was only taking magnesium, D and K+ at the time of the lab. (No other meds or supplements, taken for one month.) So for now it is believed by my doctor and I that I do have this. I meet all the criteria for it. My doctor said if I continue for another 6 months like this, and/or my DNA rest shows mutations for it, then I will have an official diagnosis. I'm feeling better than I have in over 20 years! My muscle weakness is almost completely gone. My finger tips have feeling in them again so I can get back to learning to play the violin. Pollens that normally do me in are out with a vengeance but my body doesn't seem to notice. My neuro vision problems are gone. All my neuro stuff has stopped. All my health problems have stopped for a month and a half now. (Except I know I am still celiac and can't eat a few foods for the rest of my life, and I'm good with that.) I never expected to feel this great! I don't feel handicapped anymore. And I am ready for adventures!
Periodic Paralysis is genetic. I think it just started with me. No one else in my family has had my crazy stuff. It's an ionic chanelopothy. My body does not process K+ correctly. When the potassium shifts, my muscles weaken or go paralyzed along with other neuro problems. When the K+ levels in my body gets corrected, (by supplying more K+) then the symptoms/problems stop. There are several variations of Periodic Paralysis. Some versions are symptoms with K+ getting too high. I've told my doctors for 15 years it's like a light switch being flipped on and off. One minute I can walk and the next I cannot. A lot of doctors have tested me and been amazed that one minute I have reflexes and the next I do not, until that episode ends. Now I know that "light switch" is potassium. I do feel the chemical shifts in my body when I get the right amount of potassium. It feels weird. I read that I have 50% chance of passing this on to my kids. I started symptoms when I was 18, with two episodes as a teenager. I'll be 40 in 2 months. I'm glad I know now, to prevent my children from going through what I did.
I'm really thankful I found Susan's book! She has a book and workbook. I bought both and have been thrilled with how much I am learning from them. I'm thankful she has taken her experiences and tries to create awareness for this problem. Yes I did the work, but I got the idea to ask for a re-evaluation from reading what Susan has written/writes. I am writing this post in case it helps to add awareness, because so little info is out there, even for specialists. Here is the book I bought, and the website with it that helped improve my life a lot!
Julie’s Blog:
http://juliesimplifieslife.blogspot.com/2015/06/trying-to-balance-my-life-periodic.html
Until later…
It is amazing and wonderful to visit your site. I've learn many things from your site.
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Thank you for visiting our PPN Blog. I am happy to know that others are learning about Periodic Paralysis from us.
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