This past week I’d seen my two fanciest doctors. It’s rather like I’m at an exclusive private school for sick people that has a scholarship program for the poor kids who live on the wrong side of the tracks. You might get a foot in the door if you’ve worked hard enough to get Medicare, but you still have to pass the entrance exam and audition with the flying colors of having a rare and interesting enough health issue to be accepted into the fold. I’m “lucky” enough to be very very “interesting” in this way. 

First on the docket was the office of Doctor Lange, neurologist at the Hospital for Special Surgery. Visiting him is like an episode of House, where I am first visited by white coated doctors who ask and read and poke and prod and test and do so with very little personality. Then the good Doctor Lange arrives in his brown suit, and he sits on a stool with a comfortable swaggery lounge in his body language, while the two white coats follow in his wake, standing awkwardly against the wall beside/behind him. They speak quietly to one another, and inbetween their mumbling quiet conference, Lange smiles and asks me questions. This week’s visit with him brought the decision that the Mestinon I’d been taking for over a month had had no effect (aside from the nausea and twitchiness), and so Myasthenia Gravis has been taken off the table as a diagnostic possibility. Now they are “grasping at straws” and have decided to put me on prednisone as a “stab in the dark” to see if I have any positive effect from it. 

(As the doctor was rattling off the side effects to me “mood swings, weight gain, increased appetite…” the woman in the white coat noticed my grimace when “excessive hair growth” was listed, and dutifully mentioned to Lange that I was clearly not pleased, already battling that issue from having PCOS. I responded with “Yeah, I already shave my face every day to fight off this goatee, but I’ll try anything if it’ll work.”)

So. I am to take increasing dosages of prednisone for the next six weeks, and then revisit the Hospital for Special Surgery to see if there is any improvement. At that point they will order a muscle biopsy to see if they can determine what sort of nerve, muscle, and/or connective tissue disorder I have. 

And then the very next day, I visited my geneticist. Dr. Jessica Davis an  amazing and really lovely woman in her late 50’s/early 60’s. When I went to see her, she helped me carry me belongings into the examination room. She went through all of my records again, and asked me the terrible questions that made me nearly cry:

Seriously. These, especially that last one, are the questions that decimate when you are a person with chronic illness and no respite in sight. They are also the questions that accurately triangulate how a person in my situation is doing: not very good. It is quite difficult to say out loud “I’ve been trying to teach my left hand to draw and to use the computer because even using my right as my mouse hand hurts terribly after a while” without bursting into tears. I only just kept it together without my voice warbling. Too noticeably. I hope.

The echocardiogram she’d ordered for me a few months ago simply let them know that as of now my heart is not effected by vascular Ehles Danlos. However, it seems that vascular EDS hasn’t been taken off the table; I could still have it. It’s still likely that I could have one of the different kinds of EDS, but she doesn’t have enough supporting details to justify that kind of test. Getting my disability medical insurance to pay for the expense of a genetic test is quite difficult I gather, and even though I seem to have filtered out almost every other possibility at this point, they need more evidence. Because I’m in the fancy private school, but I am still the poor kid on the Medicare scholarship.

(So. Maybe it’s a lesser form of Ehlers Danlos, and with it, a Chiari Malformation. I do still keep getting the terrible headaches when the weather pressure shifts. I suppose I’ll have to make an appointment at a headache center and hope they find something.) 

Dr. Davis is concerned for me. She told me that I “could really use a break.” She’s right. She told me that I should get better/stronger pain medications. She’s right. She told me that she’d see me again after they’ve figured anything else out with Dr. Lange. She told me that I was welcome to call her if I had any concerns or questions, and that I could arrange it with her assistant and make a phone appointment ahead of time so that I didn’t have to play phone tag with her. She helped me carry my things to the elevator and hugged me goodbye.

Egad. I think I prefer the cold Vulcan logic of the detached physician who condescendingly throws technical terms at me not assuming that I know exactly what he’s talking about. It’s just facts. It has no weight. However, having a doctor that is concerned about you, having a doctor that looks at you with eyes of worry…. it’s a nice change, don’t get me wrong, but it really strikes at the heart of you and fills your eyes with tiny oceans. 

Last week I had more tests done; hours of EMG tests.

I had electrodes all over my scalp, all down my spine, and also my collar bone. The electrodes were attached to a machine that recorded how the electrical signal registered from point A to point B. 

The tests for my hearing didn’t seem to asymmetric, though I already know from previous hearing tests that one ear has slightly impaired hearing. 

Then there were the arm tests, where electric shocks were sent down my arm by a device that was pressed against my hand that made it jump and twitch in response. One arm at a time was done, and not surprisingly, while the left side hurt like a BITCH, the right side felt more like good pain.

Then the leg tests, with the same method as the arms. My left foot hurt horribly as it was zapped with electricity, and the right? The right felt no discomfort whatsoever. The right foot felt as though it was at about 35% compared to the left. I was expecting my right side to be a bit lax and all, but that was quite honestly rather alarming.

And then the vision tests. Good gawd. Just staring at a checkerboard computer screen that switches between black and white to white and black while having to concentrate on a red dot dead center. My poor eyes could hardly hack it. 

I’ve got another doctor appointment in the near future, but I’ve asked them to mail me the results from these last tests. Hopefully the results will arrive in the mail tomorrow and I’ll have some numbers to crunch.

I also have another visit with the geneticist in the near future. My echocardiagram showed nothing wrong, so I thankfully do not have any signs of vascular Ehlers Danlos Syndrome. However, I’ve not yet been genetically tested for any of the other types of EDS, which is probably going to be the next step.

(this is not as well written as I usually attempt, but I’ve been ill with a bronchitis of doom for days and I’m delirious)

Earlier this week, I saw doctor Dale Lange: Chairman of Neurology and Neurologist-in-Chief at Hospital for Special Surgery, Professor of Neurology at Weill Medical College of Cornell University, Attending Physician both at Hospital For Special Surgery and NewYork Presbyterian Hospital‘s Weill Cornell campus, and President of the New York State Neurological Society. As you can imagine, he is difficult to see, like a House type fellow. He had to be sent the notes from other doctors in his circle and find me interesting before they’d let me make an appointment. I went in for four hours of testing and consultation. For most of the visit, I was interviewed and tested by white-coat doctors. Three different doctors performed Single Nerve Fiber EMG tests on me, where they stuck needles deep into my flesh to hit nerve/muscle junctions (fucking GAHHUUUrrrghHH) and listen and look at the wave forms of electric signal passing through. It was really quite painful, and I’ve got quite a tolerance for pain. After hours of this, Dr. Lange came in (sans white-coat), and was recited my entire medical history by one of the white-coats from memory. He was brusque with her, but entirely thorough. He noted the muscular atrophy of my right hand; something few doctors do. He explained to me his thought process and what further tests would be looking for, and did so in a way that was neither condescending nor obtuse. 

I interest him. I have a whole new battery of tests to get. He is most interested in a test I had years ago; an Evoked Potential test that showed an abnormal response, meaning that the path of information taken from my eyes to my visual cortex is more circuitous and different than it should be. This indicates some degree of brain damage. It is still in the air whether or not the cause of this is a congenital issue (making sense due to my extremely premature and low-weight birth) like something mitochondrial or inherited, or if it’s an illness/disorder I could actually battle and rectify.

Is it Myasthenia Gravis? Possibly. Something that LOOKS like Myasthenia Gravis? More likely.

Somethings that look like Myasthenia Gravis are: MS, Chiari Malformation, Lupus, Fibromyalgia, all of which I’ve been tested for. I’ve now entered the foray of weird and rare disorders. I’m a one in a million.

I have still not discounted Chiari. When I mentioned this possibility to the doctors they discarded the notion saying that Chiari Malformation would not explain the visual symptoms, which is entirely incorrect. The cerebral tonsils’ blocking the egress of the Foramen Magnum causes an increase of cranial pressure that damages soft tissues such as the optic nerves, and often manifests asymmetrically. That being said, the possibility of Myasthenia Gravis is far more appealing. If I had the auto-immune variety of MG, a thymectomy could possibly cure nearly all the symptoms. If that were the case I might end up with a crazy scar that looks like I went through an autopsy (though they usually do it all endoscopic-like these days). BADASS.

 I have a prescription for Mestinon, which is essentially a low dose pill version of the drug Tensilon, showed in the video below. Mestinon and Tensilon both reduce the effects of Myasthenia Gravis by preventing  breakdown of the neurotransmitter acetylcholine, giving more opportunity to damaged/ineffective neuro-receptors to receive signal. A positive response to an injection of Tensilon is an almost sure fire indication of auto-immune Myasthenia Gravis, and does, in some cases, also respond to the congenital variety of MG as well. It is frustrating that I have to take these pills on a slowly increasing dosage for a number of weeks to see if I have a positive reaction instead of the instantaneous indication of injection. Especially since my symptoms fluctuate so much on their own accord, it will be difficult to determine if the drug has any real effect on me. 

Unfortunately, the recent needle test on my nerve signal was seen to be relatively normal, without the tell-tale weakness from hours of exertion that would normally been seen with Myasthenia Gravis. This time I was only tested on my right (bad) side. When I had a similar test many years ago, I was tested on both sides and it was found that my right side was significantly weaker than my left. It was for this reason that I’d been seeking a more structural underlying cause than something chemical. However, every spine specialist and every X-Ray and every MRI (and there’s been a lot of each) has told me that my scoliosis has nothing to do with most of my long list of symptoms. This makes something chemical or genetic much more likely.

Regardless, I have doctors who are interested in me, who have looked closely enough to determine that there are ACTUAL and QUANTIFIABLE deficiencies in my underlying physique and neurological function, and are willing to do the weighty amount of leg work to figure out the cause. 

(Day 2 of Mestinon. I’m on eye-lid patrol, seeing if my right-sided blinking lag starts to lessen, if my eyebrows become more asymmetrical in position, or if the diagonal forehead wrinkle striaghtens out. No sign yet.)

I’m on my own.

Being on Disability, with both Social Security and Supplemental Security Incomes, I am only granted about $800 a month. After rent and utilities, that leaves me with about $100 to live on each month.

(thank goodness for the $200 in food stamps I get each month, or I wouldn’t survive)

There’s the medical bills from before my Medicare came through that have gone to collections. There’s the massage therapy and water therapy to reduce pain and improve my daily life. 

There’s the fact that I sleep on an air mattress, and my spine really needs a proper bed. There’s my need for life basics, like new socks and new bras. 

There’s the fact that the sickness has taken from me most of my artistic and long term aspirations, leaving me clinging desperately to photography as my one reliable outlet and potential means of income, and there’s always needed upgrades.

There’s the paralyzing financial agoraphobia; the sorry state of being so broke and so stressed over every single dollar spent, that I cannot go out of my apartment. Just the ability to sit at a diner or a cafe once or twice a week, just to be out in the world…. to be able to do something sometimes… it’d be magical.

And there’s the fact that if I DID manage to figure out some way to earn money within my limited means, selling something on etsy or cafepress lets say, then they’d take it out of my SSI, and even just making a few hundred dollars a month would threaten my Disability status, and in doing so, threaten my Medicare.

I cannot lose my Medicare.

So.

If you are so inclined as to throw a few dollars to my paypal, I’d really really really appreciate it.

Don’t think of it as donation, think of it as a tip jar!

The Good: I went to one of the top rated geneticists in New York City yesterday. She was awesome. She spent over an hour with me going through my medical history and that of my relatives. It seems that my personal M theory was totally on the money, and she’s come to the same possible conclusions that I have: almost definitely Ehlers Danlos Syndrome, possibly the vascular variety (or maybe some other more nondescript connective tissue disorder). Therefore, I get the smug joy of being completely justified in my medical theorizing, and knowing that I can lord my righteousness over all those who thought me lazy, weak, or hypochondriacal. Fuck you, I was right!

The Bad: Well, It seems that my personal M theory was totally on the money, and I almost definitely have Ehlers Danlos Syndrome, possibly the vascular variety (or maybe some other more nondescript connective tissue disorder). Therefore, I get the terror doom of having to face a probable diagnosis that will mean maybe five good years left in me (but almost certainly dead in fifteen); a future of ever looming strokes, organ ruptures, heart malfunction, pain, and spinal instability; and the hideous possibility of my lady parts falling out (no exaggeration, I’ve an aunt who might have to get sewn shut to avoid uterine prolapse, and I’m already showing future signs). I go for an echocardiogram doppler thingee Tuesday to determine whether it’s the vascular version, or just a connective tissue version, or perhaps some overlap between the two.

I have been working on my own personal M theory.  Please do consider reading my very thorough medical history and postulation, add anything of merit, and perhaps pass it on to anyone who may have some insight.

[edited and updated from 7 Feb 2011 on 27 Aug 2012]

HISTORY:

I’ve a Great Aunt Louise on my father’s side who has the same strong square jaw that I do. She died young of an ectopic pregnancy.

My mother has suffered since childhood from Perthes, which is a rare genetic disorder that effects the growth of the hip joint. 

She is a severely scattered person without certain social boundaries, and without certain control. She’d had CAT scans done and was told by a rather reputable doctor that her brain behaved as though she’d had a series of small strokes.

Even though my mother was pregnant at the youthful age of 18, my three month premature birth was attributed to her having a weak cervix.  This weakness of lower abdominal / kegel muscles runs in the family, and I’ve an aunt with extreme problems in this region as well, who’s also been diagnosed with Fibromyalgia and has had surgery on her neck due to extremely progressive disc degeneration. (This side of the family also has a history of Tourette’s Syndrome, Obsessive Compulsive Disorder, chronic depression, trichotillomania, and assorted aspergic behaviorisms.)

As a child, I was clumsy. Accident prone. As a toddler I fell down stars and broke my arm. I fell off a fence in Disneyland when I was 5 and had stiches on my head.  I fractured my tailbone twice in elementary school. I fell off a swing once, and fractured my sternum.  It didn’t heal for years, and I could pop it back and forth with noise. My mother suspected physical abuse at some point because of the degree of bruises I always had. Nope, just a rambunctious yet clumsy tom boy who is VERY prone to bruising.

Elementary school years discovered scoliosis. By junior high, I had an occasional limp and heel pain, attributed to tendonitis.  My joints would make audible grinding sounds when I rolled my shoulders - something one could hear across the room.  I’d do it to gross out other kids. My joints made popping sounds when I rotated my ankles, so much so that while on vacation, unable to sleep, laying in bed in my hotel bedroom and absent-mindedly spinning my ankles, my mother heard the sound through to her adjoining room and came in alarmed, thinking the pops and cracks were the sounds of an electrical fire.

My knees sounded like popcorn when I kneeled. My back and shoulders began to constantly hurt. My back would have numb spots. My rib hump began it’s continuing and everpresent pain. Visits to the chiropractor’s masseuse were met with shock when they told me that I’d had muscle spasms.  I didn’t know that was rare or wierd.  I’d always had small bits of my body suddenly start to twitch and flutter. My tonsils were always inflamed, and every sickness I caught brought with it a deathly painful sore throat.

The rare times I was brought to a real doctor and they pressed on your abdomen, I remember it hurting.  I didn’t realise I was supposed to say anything.  I thought you were supposed to sit and take the discomfort when they pressed. All this before highschool.

My teenage years brought trouble sleeping, awkward circadian rhythm, trichotillomania, irregular menstural cycles, constant pain, fatigue, blue veins showing through skin all over my body.  My once tom boy nature dissipated, and I had no endurance. I always felt ill in some way. Also, it turns out, I’m terribly short. I am the shortest blood relation on either side of my family, far more than the scoliosis would account for.

(i am second from the right. the short one with the square head.)

By age 19,  I started to go suddenly crosseyed with my right eye turning in, and my right arm began a near constant ache.  Visual disturbances (possible opthomalogic migraines) began, especially when in sunlight.

Panic attacks grew frequent, as did my hirsutism. I could no longer concentrate, I started to get lost on roads I’d traveled before, easily confused even in my home town as to which way to start, couldn’t keep my right from my left, and began to see what I thought were hallucinations.  My vocabulary and ability to express myself began to wane.

Neuropathic pain (zapping, stabbing, buzzing, pins & needles), always worse on the right side, started to set in my extremities with my early twenties.  Varicose veins, large blue ones, began to appear on my right leg, which also began to ache horribly. My right side continued to weaken, some muscle wasting seen on the right side, the asymmetry most obvious with regards to my tricep, calf muscle, and hand.

At age 26, walking down the sidewalk, I suddenly heard a high pitched click, and was in such severe pain that I could no longer put any weight on my left ankle.  A tendon on the inner face of my ankle had snapped or something, but having no insurance, I was left to use crutches or hop for a number of months.  It never healed properly, and if I run, sit on my heels, or even just walk too much, the injury will present itself again.

My hands would tire out and not grip if I used them too strenuously.  My hands and feet would cramp shut if I used them too much - even when just doing laundry.  My hip joints began to pop (but do not dislocate), and often cramp.  Actually, by this point, every single joint on my body popped, cracked, snapped.  Knees, toes, wrists, hands….  My toe joints began to swell and itch and ache on occasion. My heat intolerance, which started to become an issue when I was a teenager, continued to worsen.  The lightheaedness and weakness and shakiness that always accompanied temperatures warmer than 80F became debilitating in many situations. 

Though my crossed eye was surgically improved by a surgery to shorten one of the stretched out and weak eye muscles, my vision continued to get worse.  

Colors were not always seen correctly - seeing flashes of red where there should be green, seeing patterns of color when there was flat grey.  My right eye sees significantly less color saturation, especially warm tones, and less contrast.  My pupils started to dilate unevenly and off-center. When going from a bright environment to a dark one, my right eye will be mostly blind for a good five minutes.  Trying to see the moon, even with one eye closed, is always a doubled blur.  Also, light sources often have foggy halos around them.  My right eyelid and brow began to droop slightly. This worsens when I exert myself; when engaging in exercise, it grows more difficult for me to see.

I started to get spider veins on my upper arms, my face, and even on my right shoulder blade.  Tinitus began to whine in my ears.  Sharp tight pains would come without warning right at my sternum. My eyes and nose became painfully chronically dry, so much so that I’d wake in the night and have to apply eye drops. 

The area between my collar bone and breasts was almost always in a state of subtle tiny bumpily breakout. The skin around my nose would often turn an orange-ish color. My rings would not fit me when I’d wake up in the morning. I’d urinate with ridiculous frequency, usually waking twice a night to do so. I noticed a smattering of new dark freckles appearing on my trunk. My hair started to thin and fall out.

I had more and more dizzy spells, and actually had one incident where I fainted, twitching/convulsing  while passed out, and once roused, kept continually fading away while being escorted to where I could lay down.  Once laying flat, there was a great rushing sound in my ears.

After many tests, and even a spinal tap (which took a week longer than normal to heal), it was confirmed that Lyme Disease was NOT the cause of my symptoms.  Then, ironies of ironies, shortly after moving to Northern NJ two years ago, I was told that I had caught Lyme Disease on TOP of all of this I’d already had wrong with me. More burning joint pain, more fatigue, and intense brain fog…  but the most severe symptom I’ve suffered is a constant agonizing and debilitating pressure at the back of my head.  For the better part of a year I was virtually bedridden, unable to sit upright for more than 15 minutes at a time, due to the terrible pressure headache. For six months straight I’d taken antibiotics, and I still haven’t completely  kicked the recurrent brain swelling headaches. A recent test showed that I do not have Lyme active in my system, but the brain swelling headaches remain. With every sudden change in barometric pressure, and whenever overheated, the back of my head pounds. What I did not realise until this point was that the headaches I’d gotten my entire life at the back of my head from laughing excessively or smiling too much were abnormal. These have continued, and have worsened from my experience with Lyme Disease.

MEDICAL FACTS:

Brain MRIs have noted some irregularities in the shape of my pituitary.

Brain MRIs have shown a minimal protrusion of my cerebral tonsils into the foramen magnum (the back of my brain is poking out of the hole of the base of the skull), which is called a Chiari Malformation.  (I’ve had two doctors affirm that I do have this cerebral herniation, but I will have to find a specialist in this disorder to get a doctor to admit that it may be the cause of my symptoms, since most judge it by the amount of “pokey-outey” instead of the increased intercranial pressure, which is the real culprit of symptoms.) My dozen or so brain MRIs have shown no evidence of MS.

Through ultrasound imaging, it was determined that I have poly-cystic ovaries, and thus, have poly cystic ovary syndrome.  This is a condition of hormonal irregularity, which not only effects the reproductive system, but is a wide spectrum of hormone imbalances - often considered “pre-diabetes” because of the effect on insulin.  It took a great many years to discover this because usually women with this condition are significantly over weight.  I do, however, have an impressive degree of male pattern hirsutism which has been growing ever steadily worse since puberty, and continues. The hair at the crown of my hairline has begun visibly thinning these past five years as well.

My scoliotic curve is in the grey area between necessary and unnecessary with regards to surgical intervention.  My scoliosis is, however, very unusual.  I’ve a misshaped verterae, causing an atypical sharpness of a curve in my upper back, which is also in an unusual location. (Suspiciously, this vertebrae is directly behind my fractured sternum.) I therefore have three curves instead of the usual two. My scoliosis has been repeatedly determined to NOT be severe enough to be causing the myriad of debilitating symptoms I have.

The doctors find it likely that I was born with some disorder; something genetic, something rare, etc. 

The turn in of my right eye is attributed to a 6th nerve palsy, the underlying cause of which remains undetermined. Visual Evoked Response testing showed great irregularities in how information is transmitted from my eyes to my visual cortex in BOTH eyes. A Visual Fields test showed blind spots more prominent in my right eye. An EMG test showed lessened neurological signal in my right arm compared to the left. Glaucoma drops have lessened the blur and double vision of my eyes when used individually. Hearing testing shows some loss of range in my left ear.

Over the past ten years I have slowly developed a strange series of about six skin bumps which have only appeared on my right arm. They have continued to appear one by one, and seem to be doing so in some kind of pattern or path. I would think it was connected to my other issues, since the right arm is where the limb pain first started and has always been worse.

Tests again and again for MS and rheumatoid factor have come back negative. I was once informed that I had a heart murmur, but no doctor since has made note of that. I have chronically low temperature and blood pressure (and iron - which was sort of enjoyable since I had a doctor tell me to eat more red meat and salt!) A rheumatologist discovered that I had severe vitamin D definciency, the levels of which she said she’d not seen in anyone that wasn’t a resident shut-in of an old-folks home. Recently, however, being tested for Lyme, it was discovered that I no longer had Lyme, and may never have had it. It is now considered possible that I have some rare sort of auto-immune disorder. It is similar to Lupus, as my ANA test came back positive, but unlike Lupus where the Complement Levels (an immune system component) of both C3 and C4 are low, my system shows only my C3 level as low. So, this points to something of immune system (or underlying genetic impairment) as opposed to infectious disease.

A neurologist, examining me and pressing on the thumb pads of my hands, noticed how much weaker and atrophied my right was and suggested perhaps I had syringomyelia. Those tests were never carried out, but I imagine it would have shown up in my MRIs (unfortunately, unless it’s glaringly obvious, radiologists rarely find things that the doctor has not specifically stated he/she is looking for).

Doctors have also diagnosed me as having: degenerative disc disease, spondylolisthesis, neuropathy, organic brain disorder, irritable bowel syndrome, protruding discs (3 to 5, depending on the radiologist report).

I had sent my MRI records and questionairre to The Chiari Institute four years ago, and they’d wanted to see me. I was unable to afford the visit. Recently, now with Medicare (the only insurance they’d accept), I applied once more. They told me they could not take me as a patient. When I inquired what the change was, I was told “new protocol.” Coincidentally, they recently began taking commercial insurance for the first time. I asked for a review of my case, which supposedly took place, but they’d returned my MRIs to me already. The only thing that changed between then and now is my insurance coverage, and their insurance coverage practices. They maintained their stance, but haven’t told me that I either do or do not have the Chiari Malformation. Frustrating.

I had been tested previously for Myasthenia Gravis, but a recent visit to a new neuro opthamologist has rekindled the possibility, and I was told that I should again be tested. However, the office has claimed that I have no future tests called for, so I’ve no idea.

MY CONJECTURE:

I believe I was born with a genetic / auto immune disorder that effects connective tissue.  The first possibility is Ehlers Danlos Syndrome, which happens to be a connective tissue disorder which is comorbid with / underlying cause for a Chiari Malformation. 

There are many different varieties of EDS, the most common being the hypermobility sort, when people can stretch their skin and bend their joints in unnatural ways.  I do not have the hypermobile joints, though I can easily bite my toenails or grasp my hands (one over one under) behind my back, and that’s in spite of my scoliosis, hump back, and crunchy joints.  However, there are other types that don’t involve such severe “circus-tricks”, all of which effect the joints and vascular system in varying degrees. 

Other general symptoms of EDS listed in medical literature of which I exhibit:

• attached or complete lack of earlobes (of which I have both)
• very soft, smooth skin
• facial skin is very resistant to wrinkling (I am continually accused of being ten years my junior)
• chronic dull joint and limb pain 
• tendonitis
• teeth are too soft and prone to decay (my last visit to a dentist I had 24 cavaties filled and a tooth pulled)
• resistance to narcotics, sedation, many toxins (oh yes)
• dry eye syndrome
• tendency to develop neuropathic pain

Shortly after receiving the previously posted letter, I emailed The Chiari Institute and mentioned that I’d had an appointment with them years ago when they said I was a candidate, and didn’t understand why they were now rejecting me. I was emailed back, told that they would review my case.

I just listened to voicemail I’d not noticed from earlier today. The Chiari Institute. Seems they took another look at my records, and yes, they were going to have me come in to see the neurologist when I first sent my information years ago. But due to the “new protocol”, they do not feel their “services would offer me any relief.” They aren’t saying I’m not visibly fucked, but they are saying they can’t do anything to fix me.

So.

Ok then.