Sunday, January 4, 2015

i'm fine...

... is my answer for the question "how are you doing?" every time.

i'm fine because i don't want people to cry.
i'm fine because i don't want others to worry.
i'm fine because i don't want you to know that the fall hurt.
i'm fine because i don't want people to feel bad for me.
i'm fine because i don't want attention for laying on the ground or sitting in a chair looking like i'm sleeping.
i'm fine because i don't want people to know how frustrated i am.
i'm fine because i don't want to talk about what is scaring me so badly i can't sleep.
i'm fine. i'm ok. a look, a shrug and a "is what it is right now" to try and put people's mind at ease.

because what we thought were seizures for the past 4 years are not.

i haven't been officially diagnosed but when i went to the hospital last month, they said i was presenting with many of the symptoms for periodic paralysis - where i literally go paralyzed from time to time.

roses from mom after i got out of the hospital <3

it's so much more than 'just being paralyzed.' i invite you to try this exercise.

get in as comfortable position as you can on the couch sitting up. set a timer for 20 minutes and start it. now, go limp. totally and completely limp. if you had your legs crossed they should be falling to the floor. your fingers should curl up a little. and most importantly your neck. it will either flop to the left, right, or straight down. now you can't move or speak for that whole time. you can swallow and blink, but your eyelids have lost muscle tone so most people will think your eyes are closed. your mouth will droop too. all through this you conscious, you can see/hear everything, and most importantly you can feel pain.

you'll start to notice pain in different places. your neck hurts. it is strained. ugh, you think, won't someone come move it for me because i can't move it myself. your feet and hands get cold. ooo, you've got an itch on your nose. then the feet cramps and muscle twitches start. you can't pull them out or tell someone about them so you sit there, praying it won't turn into a bad one. and about minute 19 you'll notice you really have to pee.

the timer went off. what did you do first? rub your neck? warm your hands? itch your nose? go pee?

this is what has been happening to me for the past 4 years. my first neurologist said "it's not neurological" hinting that it was psychological and that i needed to go see a psychiatrist to be treated for it. my psychiatrist gave me the diagnosis of conversion disorder (pseudo-seizures) basically where i was converting the anxiety/stress i felt into physical symptoms (not on purpose though) and those symptoms came out as seizure looking events. after about 3 years of little to some improvement i changed psychiatrists and the new one said it's not psychological/conversion disorder and referred me to a different neurologist. this neurologist got part of my diagnosis correct in saying what i have is a channelopathy (with drop attacks - where i loose all muscle tone and fall to the floor without warning) and that i have seizures deep in my brain that an eeg wouldn't pick up. i went on a treatment for that for 11 months with side effects and in november i started having daily attacks lasting from 10-20 minutes. with no answers from that neurologist as to why things were getting worse i went to ut southwestern for a few days and there they said i do not have seizures at all but that my sympotoms match a neuromuscular disorder called periodic paralysis.

i then had an appt with an epilepsy PA who kept saying "i'm so confused. your case is very confusing. i don't know what to do." tell me about it lady! luckily i had an attack while there and she got her neuromuscular colleague who did some tests on me during the attack (putting pressure on my fingernails with her fingers and then using a pen to push down really hard on my fingernails) to see if pain would bring me out of it (or probably more accurately to see if i was faking it). it. hurt. so. bad. i almost cried. i prayed so hard to come out of that one so i could tell her how much it hurt. i did come out of it and she seemed surprised to hear that it hurt me. just because i'm paralyzed doesn't mean i can't feel pain. all in all it was ok though because she gave instructions for further testing and said it does look like i have PP. (would love to take a pen to her fingernails but whatever...)

the most helpful resource i have found for beginning to understand this rare and confusing disorder is the periodic paralysis network, inc. the founder writes some amazing articles about PP. 

some of my triggers i've been able to identify so far are anxiety/any strong emotion, exercising (which really sucks because i need/want to do that...more on that in another post), stress (good or bad), fasting, and changes in the weather (like when it's cold, rainy, and dreary).

here are some good definitions of what PP is below:

"Periodic paralysis is a group of rare genetic diseases that lead to weakness or paralysis (rarely death) from common triggers such as cold, heat, high carbohydrate meals, not eating, stress or excitement and physical activity of any kind. The underlying mechanism of these diseases are malfunctions in the ion channels in skeletal muscle cell membranes that allow electrically charged ions to leak in or out of the muscle cell, causing the cell to depolarize and become unable to move (a channelopathy). Patients with this diagnosis will have periods of weakness that generally are felt to completely resolve, sometimes in a matter of hours." Mayo

"Periodic Paralysis (PP) is a rare, mineral metabolic disorder, called an ion channelopathy. It is generally inherited and characterized by episodes of muscular weakness or flaccid paralysis without the loss of sensation or consciousness. Dysfunction of the ion channels for potassium, sodium, or calcium is involved. Regular activities such as sleep, exercise, eating, and taking medications can trigger muscle paralysis. Episodes of muscle paralysis can be full body lasting minutes, hours or days. Permanent muscle weakness may occur over time. During periods of muscle paralysis a person may experience difficulty breathing, heart rate fluctuation and arrhythmia, blood pressure fluctuation, and choking. It can be life threatening. PP is often misdiagnosed and mistreated by medical professionals." from Periodic Paralysis Network, Inc

"Periodic Paralysis is an ion channelopathy also known as a mineral metabolic disorder. There are several forms of Periodic Paralysis, related to potassium. The potassium in each form causes paralysis in different ways for each type. The mechanism which causes the potassium problem is related to a different channel in the cells.

Hypokalemic Periodic Paralysis is a problem with the soduim, potassium or calcium channel
Hyperkalemic Periodic Paralysis is a problem with the sodium channel
Andersen-Tawil Syndrome is a problem with the potassium channel
Normokalemic Periodic Paralysis is a problem with the sodium or calcium channel
Paramyotonia Congenita is a problem with the sodium channel
Thyrotoxic Periodic Paralysis is a problem with the thyroid and potassium channel"


i am so scared to have this - and i am so scared to not have this, because then i have to keep searching for answers.

i ask for prayers a lot - but i really need them now. 

please pray for me as i try to get an accurate diagnosis and on a treatment plan that will help me return to living a 'normal' life.

xo

2 comments: