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?)

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Add your own.

no porn.pls.
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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?