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Avatar universal

correctly diagnosed, finally, with Pure Autonomic Failure


i said i would update my post when i found out more information, however the post is now closed and i cannot.  here is my original post:

"on december 24th of last year, i fainted while standing with very little warning. doctors have failed to reach a diagnosis as to what has caused such debilitating symptoms.
Symptoms that started the day i fainted include
:-50+ separate instances of painless muscle fasciculations daily, single muscles as well as groups of muscles twitch and contract
-petechiae rash, with new crops appearing at least twice a week, usually around my ankles or across my chest
-palpitation, which i had never had before i fainted, including skipped beats and very fast heavy pounding(i am currently taking acebutolol, and i can immediately tell when it starts to wear off because my resting heart rate goes from about 80 to 100+)
-headache of medium to intense severity that is ever present, which is immediately releaved by lying flat, usually starts at the back of the head
-chronically fatigued, yet sleeping well and waking feeling well rested
-noticeable change in vision clarity, often looks like mild static over vision, or greying of vision
-weird nausea, numbness and tingling in upper abdomen
-cold sweats
-numbness of hands, feet, scalp, that come and go, no matter if im sitting/ standing/lying down

tests done, fine unless noted:
-holter monitor twice, 48 hours each time
-king of hearts monitor, 2 weeks(one instance of arrhythmia out of 60 transmissions)
-echo cardiogram
-nuclear heart scan
-psychiatric evaluation
-multiple CT scans of head and chest (nodule on left lobe of thyroid, left lobe of thyroid has been surgically removed)
-MRI of brain and Cspine ("mild c6-7 disc bulge. straightening of the cervical lordosis)-EKGs and ECGs (sinus tachycardia)
-TSH, T3 & t4 tests (before and after i had the lobectomy on 3/27/07, fine now)
-EMG left arm
-complete metabolic panel (old infection of epstein-barr and a vitamin D deficiency, taking prescription vitamin D)
-tilt table test (neurocardiogenic syncope)
-glucose tolerance test (resistant, taking metformin and low glycemic impact diet) "

i was diagnosed with Pure Autonomic Failure, a very rare parkinsons plus disease.  my symptoms are being caused by the spontaneous failure of autonomic functions in the body, such as the constriction of blood vessels, the contraction of the stomach and bladder, and many other things.  i am being treated with midodrine(vasoconstrictor), fludrocortisone(build blood volume), and fioricet(headaches).  i was taken off the beta-blocker because it was making symptoms much worse.

please read original post, and if you have any questions about how i was diagnosed or my treatment, please reply to this post.  i hope i've helped someone!

This discussion is related to Symptoms with sudden onset now chronic and worsening.
4 Responses
445362 tn?1206965718
Thank you for this informative post. I really hope this helps someone somewhere. I hope you are ok, and wish you well.
Avatar universal
me too!  and thank you for reading and posting.
Avatar universal
Thank you for posting your information.  This really can help people who are searching for answers of their own.  I happen to be one of them.

I'm wondering a couple of things and would really appreciate the information.

First, it looks like you were initially diagnosed with Neurocardiogenic Syncope.  What test results led to the conclusion that it was Pure Autonomic Failure?  Did you have a bunch of other tests done after the initial set you listed in your original post?

Second, how are you doing today?  Are the treatments helping?

God Bless
Avatar universal
i had a tilt table test that originally concluded the Neurocardiogenic syncope.  when i was tilted up my heart rate increased to i think about 155bpm very quickly and then my bp and heartrate dropped suddenly to 44bpm and i fainted.

i have since gone the mayo clinic, to their autonomic center, and had a full work-up.  i was given several autonomic specific tests, a sweat test, with these electrodes that check your reaction to sweat inducing chemicals.  a vasovagal test which checks how your body reacts to pressure in the chest, like a deep breath and hard exhale.  another tilt table test that monitors blood pressure and heart rate in all parts of your body, and something else i can't remember, 4 tests total.  i had abnormal results on 2 of the 4 tests, the tilt table test (in which i got very dizzy and my heart rate increased without a sudden drop in blood pressure) and the sweat test(after being stimulated by the electrodes, my sweating dropped to nearly 0 which is very abnormal and indicates some form of autonomic neuropathy).  i also had a full cardiac work-up, which came back normal.  the cardiologist emphasized that the heart rate response is just an innocent bystander type situation.

also, i have a revised diagnosis since my last post.  they no longer think it is as severe as PAF, but it most closely matched Postural Tachycardia Syndrome, with Neurocardiogenic Syncope response.  i have some neuropathy as mentioned but whatever has caused the autonomic failing which triggered the PTS has likely also caused some neuropathy.

and i am doing much much better today, but not before things got worse.  the headaches were getting worse and worse and i was but on a medicine in which i had a really bad reaction to, seizure-like.  also, the midodrine increased my cardiac awareness so much that it caused me anxiety, and every beat of my heart made me an nervous wreck.  i became emotionally unstable and was admitted to a hospital and supervised psychiatrically.  the best thing to come of that was that #1 it got me out of my little world of being sick and around people again, and #2 i was placed on wellbutrin SR and it worked within a week.  

after that i felt motivated enough to go to the mayo clinic and have them look at everything more closely, and because of this i think i have a similar but more accurate diagnosis.  and the treatment they recommended for me has worked, and strangely enough, it's physical therapy!  i have been doing it for 5 months now.  it is basic cardio exercising but with constant heartrate and bp monitoring, along with very specific muscle building exercises.  the goal is to build my muscles in a way that aids the blood flowing back up to my heart and brain.  and it is working.  in fact, i only have about 2 months left of physical therapy.

also, regular therapy has been very helpful in dealing with the change in my life, along with continuing on the Wellbutrin SR (300mg per day) and adding Tranxene in a very small dose (3.75 mg per day!).  fludrocortisone is the only other med i am taking right now (0.1mg x2 perday).

i no longer have most of the neuropathy, and now i can get up in the mornings and it only takes about 30 minutes to adjust from lying flat all night, when it used to take 2 hours!!!

the mayo clinic says most people have a near full recovery, but the physical therapy helps in the meantime, and the recovery process takes 5-7 years.  sounds like alot, but after thinking i would have to live the rest of my life this way, that ain't so bad!

hope this helps.

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