details of the three days at Methodist (not edited)

as I furiously pressed the nursie button, I became angry when some fat slob of a nurse would saunter in and look at me in judgment of my screaming as they refilled another syringe with Percocet / Percodan (??). I was angry because I did not have a broken bone. MY BACK ITCHES! They hated that I would keep my clothes on. They made me itch. I couldn't take the pain, the pain. And another syringe of nothing. In my ass becasue I would not lie on my back. I would scream and scream Those poor nurses.

"What about that drug that worked so well in the emergency room?" "What drug?" "I dunno. I just took it and I slept. I should be on the chart."

Turns out it wasn't on the chart and the floor nurses were as bewilldered as I was. They were given to understand I was just some rich white girl coming off of a drug that they could not identify. But one day. two days, three days and I was still screaming. It seemed a little excessive. I wonder if the nurses finally called the doctor in.

"You tested positive for benzodiazepines," he said. "What's that," I asked as I squirmed. The nurses wouldn't let me lift the sheets away from my back with the doctor in the room. It was like having an audience with the king. This rich white girl is not impressed. This is the same doctor who forgot about me for three days. The same doctor who remarked something about he was busy and really a surgeon and he couldn't be sure what my alternative doctor had done for me. Turns out, my holistic doctor did nothing but take my money but at least he examined me and didn't stand there in judgment and look down on me, like I was being interrogated by Darth Vadar.

"It's valium," the giant doctor said. "That must be what the nurse in the ER gave me." There was nothing in the record. I pleaded, "But it worked!" "It's addictive," he declared. "Percocet is not addictive? It's not helping at all." "What are you on?" he demanded. I don't remember what happened next. I imagine I got infuriated and a round of spasms that I had been trying to hold back while being tortured by the sheets came on. Maybe Darth Doctor recorded the long scream of pain or maybe he ran out of the room. Perhaps the nurses told him to leave. They had been watching this for three days. No drug withdrawal lasts three days. Everyone knows that. Even the stubborn surgeon. I soon had a script for valium.

Three days later, my body was calm enough to handle a wheelchair ride to a car and then a ride home. I walked to the hospital. I even ate a burrito along the way. I had to wheeled out.

Dr. Useless

It was a normal day at Dr. Useless and Associates. The good, kind doctor was behind in his patient schedule. It's no surprise that you can always get an appointment with Dr. Useless. There is always a full waiting room of patients, patiently waiting for their allotted time to spend with Dr. Useless. For, you see, Dr. Useless is no ordinary doctor. He is really, really, very useless. He likes to talk about your favorite subject, chat about current events while he diagnoses his patients with useless nonsense meant to pacify and reassure his patients; providing them with information that insures that they will come back for more meaningless and sometimes damaging advice. That is why Dr. Useless is so loved by his patient patients. They need and crave his useless and ultimately damaging misinformation.

As he writes his scripts for some new-fangled poison or even old-fangled addictive poisons, for the hordes of addicts who come to Dr. Useless for their fix, Dr. Useless seems to really listen. He seems to really care. Sometimes, he even gives away some sample poisons courtesy of the drug-dealers who work for Pfizer, Beelzebub, and the other Demons of the Pharmaceutical Empire, reminding his patients to call 911 if they have a seizure or a rash. "But, don't worry, that won't happen. If you do, you can sue the drug company. [But not Dr. Useless.] Come back next week and we'll continue the treatment. Have a lollipop before you leave!"

Live the sadness hard

dying, illness, trying

I want you to know that I understand the pain of the perfectly abled. Living and making and just being fucking happy sucks. It's fucking hard. Sure I got my ticket book of excuses now. I... Oops. The meds. I'm back. I'm not the greatest at self-medicating. That's in the excuse book. I got all these new notes that read things like, "can't walk." "bg too high." "bg too low" "hour-long seizure" "i'm gonna die anyway." Ha! I wish. That last one is no excuse. We are all gonna die. That's the easy part. I need to re-learn how to live... again. And I wonder if, in five years, my nervous system will have another break-down. Right on schedule. So I got to live in-between these bouts of sickness. I got to.

Dying is easy because it puts you into a state of delirium. And you forget everything. Last year was all a dream. I was blurry-eyed and just buying my food and not seeing beyond my next rent check. Delirium is both beautiful and sad. You know you are just clinging. That the "demon has got hold of you." Or you, more likely, are fucking dying and don't know what for or why or what-the-fuck to do about it. So you buy some liver and hope that the red blood will cure you. You wash the dishes. You make your bed. You lie and wonder. You sleep and eat chocolate and candy and anything you want, because it doesn't matter while you are just getting skinnier. Eat all day.

Hide Everything. Throw out all the pills. Early. Like I did. I threw them out last Christmas. By March, I was digging through the pill box, going, "Where's the depakote? Where's the prednisone? Didn't I have some lithium?" That would make a good cocktail, maybe. But I had nuttin'. I threw out the lithium years ago.

Mania is a sign. Make every use of the mania that you can. Clean your house. Throw out shit. Delete and destroy. Save one razor-blade, so that it's old and crusty and when you need one, you won't feel like a suicidal jerk who, in fear, threw out all her razor-blades. It'll be so rusty and gross by the time....

And isn't there a more clever way to die? I recently learned that there's a walk-way along the Tri-Boro. You walk five miles. Whoda thunk? I guess it would be good if I ME ME ME had a bi-cycle. Anyway the water over the Harlem River is too shallow. My choice would be the old GWB. High over the Palisades, a long dive into the wonderful and beautiful Hudson. Nice.

Enjoy your fantasies. Remember that your suicide fantasy is all ego and no id. Your id is slipping away. Floating. Washing up one a craggly nook on the Jersey side. I always wanted to end up in heaven. (wink)

If you get to the point where you are sleeping all day, you will watch the boring tee vee with the sound off and try to read, then sleep some more. You will be far too tried to schlep to 138th Street on the West Side to off yourself. Besides, you have pretty good idea that you are gonna die soon anyway. Your brain is zero-firing zone. Connections are shutting down. I really enjoyed the bliss.

I felt a profound connection to the source of the life that was fading from me. And the source was my own and had no god-ly face. thank god. Dying is all "of this world" and a really good trip.

Now I need the courage to live, to live with the sickness, to live with the everyday, ordinary sadness and live it hard.

[edited 5.29.09 - Below is a less fanciful account of my descent toward insane blood sugars and my eventual dx as a failed pancreatic diabetic, a juvenile, type 1.5.]


At 29, I got sudden onset Stiff Man Syndrome. I got dx'ed a year later. I tested postive for the anti-Gad Antibody. Same one as diabetes..... But! My blood sugar levels were never tested.

When I was about 33, I remember going to the gyno and she pulled out her speculum and showed me a good 8 oz. of.... Gross! I thought I was eating too much sugar. I had no idea it was hanging around in my blood stream.

The night sweats began. The rapid heart beat. The cravings for fruit. Eating like a "pig".

Again, no one tested me. (She's old and skinny! Someone wrote "medical myopia" somewhere. Think that sums it up.)

At age 36, I was hospitalized with a bg of 1300 or so. They were surprised/shocked that I was not in a coma.

I had dropped to 88lbs. from a norm of 125-135. I didn't know what was happening to me. When the delirium began, I was resigned to peacefully die at home when my brother called and came over.

This is what I had been googling (when I could still read and write):

excessive thirst
constant urination
excessive hunger
weight loss
nausea

And I came up with sites for hiking! (Bring lots of water!)

My honeymoon lasted about 6 months - got a 6 A1C once. I got sick of eggs and made a sculpture out of my egg cartons. I soon learned the wonders of conscious-choice diabulemia. I was angry that they pumped full of 40 lb. of saline water in the hospital. The swelling never fully went down. Needless to say, the "skip the insulin" weight-loss plan did not work. I am still suffering the consequences. Had to double my Novolog. My latest A1C was 9 -- which is better than 12 (last September).

I am turning 40 this year, having celebrated 3 years on insulin, which immediately made me sane (God bless the Pig!) but I suspect insulin and management have given me all the "side effects" that I never suffered for the 5+ (?) years that my BS was jumping up and down. Now I get colds and other common illnesses, injuries don't heal, a fabu heart murmur appeared, my legs are cramping at night, the night sweats continue.... And Stiff Man disease does not take a day off.

I suppose my D is very brittle and I finally agreed to try the pump out - soon.

So, my query for you, my fellow LADA's.... Is it harder to deal, manage, escape the nasty consequences when diagnosed as an adult with other pre-existing conditions; without the bouncy strength and a young body to adjust to it....? That's my feeling. I had been living with it, letting it wreck havoc on my bodily system for years - perhaps as much as 6 years. The last year I went into a rapid decline.

Updated and spell-checked: The beginning.... of the Spazz

Jan. 2001 - "The bed bug bit me, " I told the doctor at Bellevue. "I know that DDT killed off most of the bed bugs after World War One. I thought they only existed in nineteenth century novels! On trains travelling through Siberia! Isn't that funny? I hear they are back. I saw one. And it bit me! The bed bug bit me! I've had the itchies ever since. And my back is morphing out of shape, right in front of my eyes!" I understood that I was rambling, but I was desperate for a reason, a clue. I had already seen a dermatologist who did nothing and charged me $500 for it. The doctor nodded and wrote something down. Doctors don't look at patients. They examine information.

I had a seizure the day before. That's why I was there, in Bellevue's emergency room. The doctor noted that I was on ecstacy at the time of this grand-mal seizure (the shakes, the convulsions, the whole nine). She assumed I had a bad reaction to an illegal substance. The only conclusion she could reach, based on the facts. Facts don't include things like "bed bugs," "the itchies," "morphing." Bed bugs are imaginary. Morphing is a comic book creation and she had probably never read a nineteenth-century novel. I suppose she thought I was schizophrenic as well as a drug addict. She sent me for an MRI anyway.

I had no idea what was wrong with me. Within the space of three months I went from dancing and acting five nights a weeks to uncontrollable spasms, itching, pain and no sleep. I couldn't wear loose clothing because anything that tickled the surface of my back sent me into spasms of pain. I tried to explain that I have had petit-mal seizures since I was a kid. An MRI? Been there. Done that. Something was wrong with me. My body was breaking down. "I also fainted on New Year's Eve. No drugs. No alcohol," I said. The doctor nods and writes something down.

A second seizure ocurred after a five-hour wait for a follow-up appointment with the Bellevue neurologist. Three weeks after my first seizure. I wasn't on drugs during the second seizure. I was taking a bath, actually, trying to relieve the pain and stress of being in the hospital all day. My boyfriend had to save me from drowning. I got a script for an anti-seizure drug called Tegretol.

Friday, the thirteenth of February, 2001. My doctor, my overpriced "alternative" doctor with the three feet long dreads and eight children and a thriving practice in the Slope, sent me to the hospital nearby. I had started to react to the epilepsy drug and I was suddenly (since the last visit) bruised and swollen. I had already spent thousands in his pretty office. He said, "I consider myself good at diagnosis but...." shaking his head. He said he would call his call "friend" - code for the "other black guy at med school" who at worked at Methodist Hospital and sent me over there. He said his "friend" would look out for me. "It's a good hospital," he assured me. These two men could not have been more different. Dr. Skeptical was a surgeon, believed "alternative" medicine" was nonsense and never showed up in the emergency room. Then he tortured me. Read on.

I was once again in an emergency room begging for help. "Do you drink?" the triage nurse asked me. "Uh, no, " I replied. I hadn't been drinking, in truth. "Are you an alcoholic?" was the next question. "An alcoholic!" I guffawed. When I say guffaw, I mean guffaw. I am a comedian. I was two months without sleep at this point. Everything seem hilarious and tragic all at the same time. "An alcoholic. Why not? Sure! I'm Irish. A family reunion means half the crowd takes off for an AA meeting!" I thought I was a cut-up.

Someone with a tag that read "MD" asked me why I didn't "look it up on the internet"? Not kidding.

They sent me for an X-Ray. I refused to put on the hospital gown. I told them the fabric... the itchies... the pain.... You should have seen the look on his face, this X-Ray technician. Now he had seen it all, I guess. I refused to wear the hospital gown. He had a naked, good-looking (some say "hot"), thirty year-old woman jumping around in front of him. The shrink came to see me next.

Dr. Vizner, the emergency-room psychiatrist decided I was bi-polar. She asked me to sign myself into the psychiatric ward. "Free medical care, " she coo'ed. "No way, doc. You are crazy. I tell you, I am in pain. Physical, tortuous pain. Like someone is ripping me apart, tearing at the muscles around my midsection." She couldn't get me to sign, so she left.

February 14, 2001, still in the emergency of New York Methodist Hospital. 2AM. No Dr. Skeptical. No neurologist in sight. There are never any neurologists in emergency rooms. I doubt they would useful even if they were. Neurologists don't like to touch people. They get to hit people with little hammers. Dr. Skeptical had yet to make an appearance. Crying. Screaming in pain. A nurse finally took pity on me and slipped me 5 mg of Valium. I finally slept.

Three months of fitful sleeping, with a book under my back so I could not touch the mattress and "the spot" on my back that set off the spasmatic, tortuous, itching sensation, two grand-mal seizures and three weeks of zero sleep. A kind nurse finally got it to stop with a little common sense.

While I slept, thanks to the "V," my 6'2" boyfriend curled up at my feet on the hospital bed to catch some zzz's himself. Dr. Vizner woke us a few hours later. When we were woken, he left for a moment, to use the restroom. Dr. Vizner took the opportunity to get me to sign. I was too weary to resist. I could only swim in the bliss of a few hours sleep. I signed myself into the psyche ward.

My boyfriend flipped out when he returned. They wouldn't listen to him. They thought (or assumed, like the drug thing, like the crazy thing) that he beat me and that was why I was bruised "in the groin area." (Turns it was the Tegretol, bruising and swelling both listed as reactions.) That was not considered at the time. I was more likely a crazy, beaten, drug-fiend hysteric who wouldn't accept their offer of pychiatric help.

I clearly remember my mother entering the triage ward. Oh, yes, I never left triage during the eight hours in New York Methodist Hospital Emergency Ward. I was in a bed in a huge room. It was curtained so my boyfriend could sit there and hold my hand. More likely though, I got a curtained bed because they didn't want to deal with me. I could peek out, though. I saw my mother charge into the room. "Where is she?" she demanded. My mother is a grade school teacher. She is used to being in charge. My boyfriend told her about the bait-n-switch by the shrink (a bad word for psychiatrist, I know, but I think Dr.Vizner deserves it.)

Mother got me un-signed to the pysche ward. She got me a hospital bed. She took control. I stayed in Methodist for a week. I fianlly met Dr. Skeptical. I have the paperwork. It's hilarious! "Lordosis unremarkable, possibly bi-polar, refuses psyciatric help, grossly unremarkable study of the spine, no significant neurological disorder, no known medications...." Hello! What about the Tegretol? Principal diagnosis: bruising in groin area. For three days, I screamed and furiously pressed the nurse button. Every few hours, a frustrated nurse would, with a sigh, administer another shot of Percodan or one of those drugs they give you when you got a broken leg. I was no longer cracking jokes. I was very very angry. What about the valium that had worked so well in the emergency? It's addictive, I was told. Huh? I told them I had never taken it before in my life. "But you tested positive for it," said Dr. Skeptical. They gave it to me in the emergency room! "Oh. Well, it's still addictive."

On the third day, I received a final visit from the shrink whom I told, in no uncertain terms, to fuck off. They finally gave me some valium. Three more days, with the bruising lessened (no more Tegretol) and nothing further to conclude, I was released with a script for a valium and a huge bill.

Eight months, dozens of doctors, and fifteen thousand or so (cash, paid) dollars later, I found out I had Stiff Man Syndrome. Dr. Frucht (swear that is his name) at the famed Columbia Presbyterian was so thrilled by his diagnosis. "Confirmed by the Mayo Clinic!" he said, jumping with joy. He got to diagnose a Stiff Man! My mother was angry when I burst out laughing. I got Stiff Man? Which is more "crazy?" Art or science? You decide.

I love the name of my disease. Only a comedian would get a disease called Stiff Man. Now I've always liked 'em stiff, but.... tah-dum dum.

My old psychiatrist eventually assured me I wasn't crazy. I have a physical illness.

It's an auto-immunity, like chronic fatigue, that has left my back disfigured with severe lordosis. Valium saved my life. Thank you Dr. Leo Sternbach. It controlled the pain. It controlled the symptoms. It took the three months to get a prescription because of my "drug history." Just a little reminder not to be too honest with your doctor. I told them that I had been using marijuana (a lot) to control the pain. And I was up all night and my brain was fried from pain (and pot) and lack of sleep. If I were a real drug fiend, I think, I should have taken heroin. Heroin might have helped. I can say this in retrospect. At the time, though, it didn't occur to me to try heroin or opium or some sort of muscle relaxant. Marijuana is not a great muscle relaxant, but it calmed me and helped me to eat. Pot heightens a person's awareness. I was very aware of the pain, the searing, tearing pain. I was becoming paranoid. Weed didn't help all that much. I can say this in retrospect. It calmed me on the outside, so other people could deal with me.

And the Stiff Man lives. She even walks again, albeit with her ass sticking out. She takes valium 5 times a day. She practices her own unique yoga and has created her own dance moves. She is even performing again.

I always wanted to be funny. Now, I am also funny looking. I am the woman who walks with her ass sticking out. I like to say that I have Ass Disease. I have a a bulging stomach that makes me look pregnant or my curved (like a swan, says my darling friend) back; so arched and protruding that I look like a woman with a severe case of Ass-itude. I walk with a waddle and the accompanying wiggle.

I want, someday, for my story to be published so people can see, up-close and personal, the limitations of scientific (medical) inquiry, the ineptitude of most doctors, the prejudice against women and "ethnic" people that inform medical diagnosis, and, perhaps, how far we have to travel to finally become our own special self.

query details

That blank page with the quote:

"There are challenged people and soon-to-be-challenged people." - Mangina, 2006.

Chapter Descriptions.

a. it's just your nerves [the beginning. background info.]

b. why don't you look it up on the internet? [the diagnosis drama and stupid doctors]

c. it's just your mind. [newly Dx'ed, the miracle cure and stupid hippies]

d. you can pick things up with your toes! [living with it. accepting. not getting mad when people pet my belly.]

e. diabetes? not a big deal. [the future will come]

Why don't you look it up on the internet?

From my wiki, Feb. 2004:

I can still hear Analee's tarty remark, "He told you to look it up on the INTERNET!"

It's true. In Feb of 2001, a nameless, young emergency room doctor, the first to see me, said that.

Eight months later, I get a diagnosis of Stiff Man Syndrome. I looked it up on the internet. The only site that had any useful information was the Yale Medical School site.

I had to google for three pages to find the Yale site today in early 2004. Three pages! Stiff Man is becoming very popular! And in my grand immodesty, I would like to congratulate myself.

Yale has updated their site. In 2001, they held the same opinion as the majority of medical articles I had clearance to read. Immunoglobulin! Immunolglobulin! Valium was considered a last resort. (I apologise for not saving the text.)

The Yale School of Medicine has useful information regarding a number of illnesses. The "medicine for idiots" site, Web MD, is unavailable, useless, or plain irritating.

I laugh while reading these "medicine for idiots" texts, because that was my "day job." I used to read medical articles and then write versions for some pharmaceutical sales idiot to sell to doctors. I have written "medicine for idiots" articles.

In 2001, the only real papers (i.e. published medical articles) on the subject definatively declared that intravenous immunoglobulin (IVIG) was the only treatment. Things have changed. I no longer have access to such "professional" literature - except at the library. Instead, I must rely on Yale. Here is the updated Yale treatment information.

Dated 11. 2003

Treatment

There are several important features specific to the treatment of this disease. Although there seems to be a strong autoimmune link, immunomodulating therapies have yet to produce consistent results. Anecdotal reports of response to prednisone, immunoglobulin or plasmapheresis have appeared. The most consistently effective therapy is benzodiazepines. These drugs produce symptomatic relief and discontinuation often leads to reemergence of symptoms. Other drugs which modulate the function of GABAergic neurons are employed with variable efficacy. Physical therapy may exacerbate spasms in some patients and should be used carefully in those for whom passive motion may be a trigger of spasm. The course of the disease is variable; there are reports of patients with SMS who respond well to medication and are able to exercise vigorously. Abrupt withdrawal of therapy may be harmful.

---Could you read it or just skim it? I know medical teminology is impossibole without a copy of Dorlands Medical Dictionary at your side. Basically, the Yale site updated/changed their mind. "The most consistently effective therapy is benzodiazepines (i.e. valium.)"

Why did they change their minds? In 2001, IVIG did not work on me. I also went off valium in 2002 and had a sudden re-ocurrance of symptoms.

[Today, Oct. 20, 2005] Today, there are 791,00 google results for Stiff Man Syndrome. And look, Ohhhh, the wee Yale site is Number One! Yer welcome. Do I get access to the Yale Club yet? pfft.

Why don't you look it up on the internet?
1. "I don't know what to tell you," the doctor says. Why don't you look it up on the internet.
2. If you are having trouble with the internet, just look it up on the internet. Google.
3. You gotta get out and get a job. Just stay at home, take a little time and look it up on the internet. Craigslist!
4. There may be adverse reactions to this drug. You should look it up on the internet.
5. Artists get exposure all over the world. Just look it up on the internet!
6. You can't remember your cousin's name? Look him up on the internet!
7. You want to get laid? Easy! Find someone on the internet.
8. You need someone to talk to? Find a friend on the internet.
9. You wanna know why you are so lonely and depressed? Just look it up on the internet!

Diabetes Type I.5 - the Monster

There has a been a monster in my belly since the day the spasms began. I suppose this accounts for my considering an exorcism as a viable medical option.

My back curved inwards in excruciating pain for three months. My back, through all the exercise et. al. never regained it's "posture."

I complained about the bump aka the Monster in the center of my belly. I knew my stomach was there. I would watch the monster move around. Squashing my stomach. Could it have been a swollen pancreas?

I got the Dx on Mother's Day 2006, nearly six years since the Dx of Stiff Man Syndrome. This fall I honor the onset of the spasms. 6 years.

The monster is still aggrieved. It could be the new fake insulin has left the poor pancreas confused. My blood glucose (bg) is an average of 120 mg/Dl of late. I was hospitalized with a measurement of 1000+! It's a miracle I am alive to write this.

Funny. Doctor y'd and said my bg had been tested. Y?

'cause I a skinny. And here's the skinny on being skinny. It's easy to be skinny if you're feeling ill.

Epilepsy - Pliny the Elder

Mistletoe for epilepsy*. Basil and thyme.

Myrrh mixed with hemp and wine for visions.

[Sorry. I forgot to cite this. It's from the Historia Naturalis. Jackson Heights library.]

*My epilepsy could be construed as "visions" per Pliny's work because they are partial temporal-lobe seizures. I see things in reverse. And upside down. And I've been here before. I am an angel floating in the air. Dizzy.

When I was a child, I would complain about the "Fruit Loops Guys." This was a vision on repeat. I called them, these, my visions, my partial temporal-lobe seizures that I couldn't understand, my "deja-vou'ies."

[update] The deja-vou seizures may be called tonic-clonic or something. No doctor has witnessed one. I have NEVER, EVER been given a firm Dx for my little epilepsies.

Opisthotony - Pliny the Elder

Opisthotony - a disease in which the body is violently curved backward, ref. Pliny the Elder, Historius Naturalis.

Pliny the Elder, Book 28, Chapter 52 "For the painful cramp, attended with inflexibility, to which people give the name of opisthotony, the urine of a she-goat injected into the ears, is found very useful; as also a liniment made of the dung of that animal mixed with bulbs."

[Sounds like 21st Century auto-immune therapy. I drank my urine for a while.]

Motor Control - Botox

You can not walk if you don't have motor control.

It's hard to explain.

Moment in time: I was not yet walking on my own yet. The fall of 2001.

I used my boyfriend instead of a cane... 'cause I could! I loved my shining knight in silver armour. Definitely silver.

I remember walking down East 6th Street approaching the Sidewalk Cafe when my boyfriend whispered to me, "Maux. Lift your head." I didn't know my head could go so low. I looked liked like I was hiding my head in shame. And I'm not yet a monk!

It's not good for your neck and shoulders.

I have neck pain today. I took it too fast on the sidewalk and I caught myself with my head bowed.

I walk like an old lady now. Sometimes. I'll hit you with my cane! (Just kidding. It's all decorated and I rarely use it. OK. I hate it.) I had "botulism toxin A" shot into my back yesterday. I think I am having a healing crisis. This is when I need a massage. Today. Now. Move the poison around my spine. Anyone?

Stiff Man Syndrome - for Dummies (i.e. doctors)

*painful spasms in the trunk or limbs or _______ add a spot.
*increased startle reflex.
*con-committent with other auto-immunitues, i.e. diabetes, hypothyroiditis aka Hashimoto's Thyroiditis, symptoms of bi-polar or borderline personality disorders, past seizure events, asthma, sudden allergies, other CNS disorders, more.
*painful spasms leading to a loss of motor control.
*unmedicated painful spasms leading to deformity (me!)
*tests positive for anti-GAD antibodies, low GABA-energic enzymes.
*hyperlordosis or some mal-adjustment of the trunk and/or stiff limbs = events that impede motor control.
*hyper-muscled trunk (I had truncal spasm)
*itchiness (pain) localized across my lower lumbar (just me?)

----------
Add your own.

no porn.pls.
----------

Rx for Dummies (i.e. doctors)

Types:

2 main types:
Those with elevated anti-GAD (Anti-glutamic acid decarboxylase (GAD), a GABA-ergic enzyme) antibodies. Glutamic Acid Decarboxylase converts into GABA, the happy enzyme!
Those without antibodies (don't respond to valium very well.)

Neo-plastic:
Ladies with breast cancer get SPS. Prolly from the treatments.

Corticosteroids are controversial, but may decrease the likelihood of mortality in severe cases that are complicated by neurologic changes.
They also don't respond to valium.

Acute:
Virus(?), presents with other auto-immune diseases. (I had sudden-onset. antibody positive.)

Gradual chronic (and getting worse):
Some anti-GAD poz get diabetes first. Maybe I just never noticed.

Treatment:
Diazepam. 40-80/day (heard of people up to 160 mg a day)
>>>>>>Like potentially lethal's mother, I take 20 mg TID of diazepam. (After you take it, you must exercise. It kicks in after .5 hour, so take a nice walk.)

Anti-GAD negative aren't helped by valium.

They use ibuprofen. They try baclofen.

Baclofen was in a movie i saw last night, fictionally controlling "lobe" seizures. I haven't tried baclofen yet. Note: The teaching hospital where I go has been pushing it since 2001. Update: I took it. It made me hallucinate (see swirling colored spots) and no pain control. Useless. (to me.)

neurontin = useless. Well.... I now take it again for the diabetic neurropathy. Not so useless. Doesn't control pain, but may control spasms.

2 outpatient Immune-Suppressing Therapies:

Plasmapheresis. It's kinda like cleaning your blood. Only tried it once. .

IVig. It's an infusion of other people's (anti-GAD-free) immunoglobulin. I have heard anecdotal reports that it helps. Some people swear by it. I confess that I got a bad bag. But I hear the bags are tested for more impurities now. (Maybe someone else with the bad batch sued Bayer! I dunno.) Expensive.

Exercise, exercise, exercise. Hospitalisation is not helpful to this end per: Lying in bed all day. I gotta go lie down. OK. I'm back. 15 mins. I take 3 walks a day. I live in a noisy city, so I get plenty of stimulation. Sitting around watching the boob tube is not stimulation. It is mind-control. Move close to a park. Short walks are fine.

Botulism Toxon A and B. It seems to work for a week. Maybe. Not a cure. No long-term benefits noted.

Note: these last two Rx are for improving and maintaining motor control. SMS can not be fixed. Only managed.

Existential Ennui - The Quiz

When someone says to you, "Ya know? All illness comes from inside, like the mind, ya know," and you are still looking and feeling like Death, your first instinct is to ask someone to shoot the hippie and the hippie train she rode in on. Fortunately, I am too weak to hurt someone, so she was safe. And perhaps, not wrong.

1. What was on my mind.... I was in a serious relationship that caused me pain and anxiety. I was also working all the time. Calling me "anxious" was not off-the-mark, but the pain was real. The mind controls pain. Pain is was informs you that something is wrong.

2. I already had an "auto-immunity." I take a little pink pill (and BTW, my parents never received their settlement from Synthroid. Class action, my ass.) [[Pay Pal address here.]] The little little pink 200mcg levothyroxin has been on my tongue since I was twelve. Dx: Hashimoto's Thyroiditis.

3. Childhood knock-out blows. Two, serious. One neurological "dissociative" experience. The two grand mal seizures, the "highlights" of the sudden on-set, I interpret as "side-effects" magnetized. My consistent, since the age of about 16, "partial temporal lobes seizures" have "normalized." Almost.

4. Immediately before my body broke down, I was electrocuted (shocked) at a bar/restaurant (It's still there) on St. Mark's Place.

5. I was immunized for Tetanus only weeks before the symptoms began.

Now you guess what the first symptom was? It's a form of pain. It was a weird itching sensation.

Extras points for naming the doctor pictured. His name is above!

Let's roll.

The treatment I take is valium. I must take up to 40mg per day. Valium was discovered by Dr. Leo Stenbeck. It saved my life. Valium is a Schdule A drug. I am not a political pundit. I am writing a memoir. I am a very fiesty person. I am the woman with Stiff Man Syndrome. One in a million, darling.

Here's a recent picture of the 90-odd Dr. Leo. Isn't he darling?