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?