Update Mid June 2013

I haven’t recently told you what big developments my doctors and I have been working on lately to figure out what is wrong with me.  I realize my non-medical friends’ eyes may glaze over while reading this.  Don’t worry; my spell-checker doesn’t know what to do with the medical alphabet soup either, so I guess you’re in good company!  The short of it is…I may have narcolepsy or dysautonomia/POTS and we’re trying to figure out which.  I’m seeking treatment from a specialist in Florida for the possible dysautonomia, and soon I will most likely be undergoing a ketamine infusion in Winston Salem for the CRPS/RSD.  Details below.

Picking My Doctors’ Brains:

My sleep neurologist suspects narcolepsy and/or dysautonomia and has tested me for seizure disorders (so far negative I believe).  I was also sent to a cardiologist, by my primary care, who confirmed my heart is fine (yay – I knew my heart was fine…the cardiologist just thought it was psychological…grrrrrr).  My pain management doctor believes the combo of Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) (this diagnosis has been nailed shut, FINALLY, and won’t be changing) and Fibromyalgia (diagnosed at age 18/19) has done a number on my autonomic nervous system, so she is also casting her vote for autonomic dysfunction.  And my gastroenterologist has also voted for dysautonomia. So at the moment, we are down to two general diagnoses for which we can test – narcolepsy and dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS).  I am being sent to two more neurologists (so I have three neurologists now?  Yeah, I think that’s right) for tilt table testing and I have no idea yet what else.  These tests are for autonomic dysfunction (i.e. dysautonomia).

Is It Narcolepsy?

My sleep neurologist thinks I could have narcolepsy because I have many of the symptoms.  A) disturbed sleep and daytime somnolence (sleepiness), B) sudden weakness – could be cataplexy (though if I do have cataplexy, I admit my version is fairly atypical in its duration!), and C) hypnagogic/hypnopompic hallucinations and sleep paralysis.  I’m grateful that there are tests to rule this in or out, though from the brochure she gave me on narcolepsy and some info I read online, it seemed as though getting the proof to show up on tests wasn’t always easy.  Interestingly, my sleep neurologist told me (like my pain management doctor had) that the diseases I have can often cause dysautonomia.  Narcoleptics often also experience autonomic dysregulation.

Is It Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS)?  (Dude that’s a long name!)

Ok, you’re probably like “dys what??!!”  Me too!  So, you probably remember from high school biology class that the autonomic nervous system controls the “automatic” functions of the body; all the stuff that happens in your body that you don’t usually have to think about.  This includes breathing, digestion, heart rate, blood pressure, temperature control and that lovely word “homeostasis” or the balance of all these systems and conditions within the body.  If an organism’s homeostasis is disturbed (like when your temperature is too high; you have a fever), that organism has got problems, man.  So I claim it – I GOT PROBLEMS, MAN!  🙂  Now imagine many of these “automatic” functions in your body aren’t working correctly and you feel constantly sick, experiencing really “weird” symptoms that doctors and even you yourself can’t explain or understand…after all, this stuff is supposed to happen automatically.  If you want to know more, check out http://dinet.org.

Suffice it to say that when you read the list of dysautonomia/POTS symptoms, I happen to have collected about 3/4 of them.  The diagnosis looks likely.  I hope that if I do have it, the problems will clearly show up on testing (since doctors don’t believe anything they cannot see on paper!!!).

The neurologists at Duke will perform the tests, but as they are not specialists in Dysautonomia/POTS, I am hoping to eventually travel to see Dr. Thompson in Pensacola, FL, who IS a Dysautonomia Specialist…one of only a small handful in the United States.  He and I have been in contact and I am ready to schedule an appointment, though it will be a solid 6 plus months before I can actually see him due to his patient load and his own health difficulties (he himself has dysautonomia/POTS).  I need someone to treat me who has more than just an educated guess about what they are doing!

If I Had A Choice…

If I had a choice in which disease I had, I think I’d choose to have narcolepsy over dysautonomia/POTS because narcolepsy seems easier to treat!  But that choice isn’t mine, because if it were, I would have chosen “D) NONE of the above”.  Perhaps if I could not choose “D) NONE of the above,” I’d choose something fatal because it seems to me that it might be easier to die than to keep living with all the challenges I have in my life.  But I won’t burden or depress you with those thoughts today.  I’m not depressed; I’m realistic, and I know the road ahead (with treatments and management but no cure) is likely to be harder than any road I’ve traveled to this point – I’m realistic and I’ve been around this block many times.

I am encouraged to know, by faith, that God is glorified as I continue to trust Him and share my hope and faith with others.  God has a purpose for both my life and my pain.  He’s making sure my ultimate hope isn’t in this life, but in Heaven, releasing me from my earthly bonds through suffering.  Ironic that the shackles of suffering can make me free from love of the world, but it is true.  This life is such a mix of suffering and gracious blessing through my Lord.  If I did not have God’s sovereignty to ground my heart and remind me of His ultimate plan for my good and His glory, I would have given up long ago.  (Who can survive such hardships without the security of knowing God is in control and that He has a purpose?  Perhaps it’s only the fear of death that keeps the agnostic and atheist alive.  I can’t imagine surviving without God on my side, however; I don’t even want to contemplate that.)  But as He continues to give me grace to endure, I hope to continue to endure for His glory and the wheeling testimony that my life is to others who see my desperate weakness and Christ’s abounding strength.

In The CRPS/RSD Department…

I will be seeing Dr. James North next Friday to have him evaluate my suitability for a ketamine infusion procedure to help decrease the pain and symptoms of Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) in my legs.  I should know more about this after my first appointment with him.  If I am a good candidate for the therapy and I am in agreement with proceeding (I am the one ultimately responsible for which risks I accept or deny; I’m the one ultimately responsible for my own healthcare), I should be able to start the treatment soon, likely in a hospital setting due to my other medical issues.
I have many questions about the therapy and its risks, but I also have a lot of pain and sincerely desire relief.  While I’m not yet desperate nor willing to accept any treatments that I believe have a significant risk of permanent injury or increasing my longterm pain, I guess it’s not too hard for me to understand why people in chronic and severe pain would become irrational in accepting otherwise unacceptable risks (suicide included) as a last-ditch-effort to relieve their pain.  Pain plays games with our minds.
My hope with the ketamine treatments is that it may decrease the 1) temperature hypersensitivity in my legs, 2) burning fire pains, 3) allodynia (hypersensitivity to touch), 4) swelling, 5) and perhaps some of the myriad of other problems I have due to CRPS.
My fears are that the ketamine treatments may 1) increase my visceral hypersensitivity (ability to feel inflamation/distention/stretching etc in the intestines and abdominal visceral organs…i.e. very painful!) or cause longterm decreased motility adding to my other disorders, 2) cause me to hallucinate vividly or become psychotic, even after the medication has left my body, or 3) not work at all (I’d be very upset and sad).
Given that my pain has been severely increasing in the last few days as the temperatures have risen, I know I’m going to have a very hard time this summer and I’ll need to hermit myself inside to avoid the reactions I have to temperature changes outdoors.  I told my pain management doctor that I expected I’d come running to her in a few weeks begging for pain relief.  Well, I’m nearly at that stage.  In her notes, she said we could consider doing more nerve blocks at that time.  The primary purpose of the nerve blocks is to determine if radiofrequency lesioning (burning the nerves so they no longer work) of the sympathetic nerves in my legs may be of benefit to me.  Yet from what I’ve read about dysautonomia, radiofrequency lesioning is contraindicated (meaning it can go badly or have negative and unintended consequences).  Plus there’s always the possibility of the CRPS/RSD spreading due to the procedure’s invasive nature.

Gutsy Girl’s Domain…

I have had more gastrointestinal difficulties in the past few months.  At this point I don’t know if it is due to the medications I have started like Lyrica, or if it’s just my body being mean.  I am still 100% strict on my diet (the Specific Carbohydrate Diet) and it certainly continues to make my GI problems survivable; it at least brings my problems down to a dull roar.  Sometimes I have a good week, and other weeks it seems like the wheels fell off.  :/
Now I know that almost everyone who has dysautonomia is bound to have either gastroparesis (intestines don’t move food etc along…it’s like they are paralyzed, leading to chronic constipation) or another significant functional motility disorder.  This doesn’t surprise me.  I’ve often asked my gastroenterologist WHY my gut motility was so messed up and she told me it was some problem with the communication between my brain and my intestines.  Now she suspects it’s dysautonomia.  Makes sense.  I just hope someone can figure out how to treat it so that I can enjoy normal motility for the first time in my life – a gift so many people take for granted.
I often feel frustrated because I do “everything right” when it comes to the diet I adhere to for my GI diseases, plus the lifestyle changes I’ve made including frequent exercise, drinking at least 2 liters of water per day, taking my medications and using enough laxatives daily so that most people would be tied to the bathroom for a week.  I do it all, and sometimes my gut still rebels and the bacterial infection (SIBO) gets out of hand.  I’m honestly out of ideas to help myself.  I really have exhausted every avenue I could find.  For now, I’ll just keep doing what I’m doing….  (And no, I don’t want to hear about how your Great Half-Aunt Thelma was cured by bloodletting with leaches while standing on her head and eating snail syrup from a golden spoon. …Just sayin’…)
So that’s the scoop, and as my Gran sometimes says, “…and I’m sticking with it”!

Prayers Please!

Please do pray for me as you think of me.  All you have to do is pray through my lists of things I’m hoping will and won’t happen as a result of treatments.  Pray that I’ll have wisdom in deciding which treatments to deny or accept.  I also want God to bless me with a strong mental and emotional constitution to accept the diagnoses that are likely coming in the next few months and trust Him with the details.  And faith – I need a whole lot more faith.  I want to be a blessing to others, even though I often feel I have nothing left to give.  Pray I’ll be a blessing.  If you think of anything else to pray for…go ahead a knock yourself out!  Otherwise, if you have the gift of tongues I envy you…use ’em!  😀  Thanks.

One thought on “Update Mid June 2013

  1. Dear writer,
    I was recently diagnosed with POTS and it is very SCARRY I have been very sick since Mother’s Day 2016 I have gone from the flue to mono to a 19% functioning Gaul blatter and now they have finally come to the conclusion of POTS I am not able to go to school I wish everyone with POTS Gods grace because He has been my only hope through this. Thank you.

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