Friday, January 19, 2007

Friday, January 19, 2007

This will be a shorter write at this point; I am compiling as much data as I can to put together what I will need to take to the Kaiser Brass, as it were, and demand better care or referral.
I've been suggested to contact and pursue MDA (Muscular Dystrophy Association) in this whole process, so I am checking that out.

Here's a link to an MDA article on Periodic Paralysis from a 1998 Quest edition: http://www.mda.org/publications/Quest/q53periodic.html
Definitely worth the read, though it gets thick towards the end of the article as they describe the nuts and bolts of what Hyper/Hypo Kalemic Periodic Paralysis is.

I'm pooling my memories and understandings into a single Word document and I'll copy that info into this entry as well. I'm not certain I'll leave this entery up, but I did want to get it out where I could read it and digest it.

Attacks Recalled:
*Earliest Recollection: 5 years of age
- Very painful re-entry from anesthesia and surgery
- Body paralysis for 24 hours as a result of surgery/anesthetic

*In the Teen Years (1973 – 1982)
- One to three attacks per year
- Normally treated at home with rest and diet change.
- I believed them to be hypoglycemia attacks.
- Attacks after or during a flu or virus
- Attacks after playing in a concert or heavy exertion.
- Affects of the attack lasted 24 to 72 hours

*In My 20’s (1983 – 1992)
- Attacks after performing in concerts
- Besides concerts, attacks were minimal
- Generally treated with rest, diet
- Affects of the attack lasted 24 to 72 hours

*In My 30’s (1993 – 2002)
- Attacks after performing in concerts between ages 30 to 35
- Approximately 5 attacks through the 10 year period
- Affects of the attack lasted 3 to 5 days
- 2000 - high blood pressure and low potassium ER visit
- “Stubborn Blood Pressure” diagnosed
- Affect of attack lasted 2 weeks

*In My 40’s (2003 to present)
2003 – high blood pressure and low potassium ER visit
- Affect of attack lasted 2 -3 weeks
- Low energy and fatigue symptoms
- Body muscle soreness and pain
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness

2004 – 2 attacks within the year
- Home treatment: rest, diet modification
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness

2005 – No known attacks within the year
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness

2006 – 8 documented attacks within the year
- 8 ER visits; ambulance and self admission
- 4 hospital admissions
- Attacks in the workplace and at home
- Affects of attacks last 2 weeks to 3 months (current affect from November 8 attack)
- Lowest documented potassium: 2.8
- Highest documented potassium: 7.6
- High blood pressure issues (220/120)
- Low blood pressure issues (65/40)
- Diagnosed with Type II Diabetes
- Global diet change; lost over 40 lbs in 8 to 12 weeks
- Random glucose tests now show normal range (>100)
- Diagnosed with Sleep Apnea
- Discontinued use of valium and “muscle relaxers”
- Received a CPAP Machine
- Began daily use of Spirinolactone in October
- Put on long term disability in November
- Purchased a Medic Alert bracelet
- Cane necessary for extended normal walking
- Chronic right shoulder pain
- Weakness on right side; arm, shoulder, leg
- Completely changed diet intake;
- 0 to few carbs as possible
- Very low sodium
- No bacon or ham
- Dr. Iyengar, Neurologist, diagnosed HKPP in August
- Dr. Stewart, Nephrologist, additionally diagnosed Primary Aldosteronism in November

Attack symptoms:
- Profuse body sweats
- Often cold and clammy to touch
- Progressive numbing in fingers, hands, feet, limbs, eye lids, jaw
- Unable to sit up under own power
- Unable to walk
- Unable to stand
- Eventual inability to move
- Progressive difficulty in speaking
- Progressive difficulty in breathing (occasional)
- Extreme fatigue
- Muscle spasms in thighs, calves, chest, arms, eyes and eyelids
- “Brain fog” and light-headedness, slow to understand
- Extreme right shoulder pain during
- Neck and shoulder stiffness immediately following

Known Triggers:
- High carbohydrate meals (large servings of pastas, pizza and some large fast food meals)
- High Carbohydrate drink (Starbucks)
- High sodium intake
- Sudden extreme exposure to cold
- Exhausted rest (following a heavy work out or strenuous physical activity at work)
- Saline infusion (flush, IV bag)
- Lignocaine (we think)
- Intense or overwhelming stress

Home Treatments:
- Diet management
- 5 smaller meal approach
- Very low salt
- Very low carb
- Random K+ level testing
- Intentional intake of high potassium foods
- K+ supplements (if needed, non-emergency)
- K+ liquid (if needed, emergency)
- Rest / no heavy excursions

Medical Treatments:
- Routine daily dose of Spironolactone (100MG twice daily)
- Narcotic pain management of daily muscle pain and weakness
- Use of cane for walking

Medical Tests Completed and Considered to date from July 2006 to the present:
Electro-muscular – testing nerve condition in right arm/hand and testing for muscle damage in right arm/hand.
Conclusions:
- Nerves unremarkable
- Verifiable muscle damage in right shoulder/arm. Distinct difference between arms.

Kaiser Genetic testing for 3 of the 14 known gene mutations
Conclusions:
- My genes did not indicate any of the three mutations tested.
- 11 remaining known mutations untested

Kaiser EKG/EEG testing each of the 8 ER visits
Conclusions:
- My tests came back “normal” on some of the ER visits and on some occasions were “abnormal” and considered unusual. Specifically, one such test came back “unusual” when it was given to me during the ambulance ride to the hospital.

Kaiser Chest X-Rays each of the 8 ER visits
Conclusions:
- All X-Rays returned “Negative”

Kaiser Thyroid Lab test
Conclusions:
- Negative for any anomalies

List of known physicians nationally who have diagnosed and currently treat patients with Hypokalemic Period Paralysis:
- Dr. Gwendolyn Claussen (Professor of Neurology) University of Alabama Birmingham
- Dr. Trivedi at the MDA clinic of Dallas
- Dr. Sharon Nations at University of Texas Southwestern Medical Center
- Dr. Gil Wolfe at University of Texas Southwestern Medical Center
- Dr. Tawil in Rochester, New York
- Dr Hills –Neurologist, Oregon
- Dr Reyes – Cardiologist, Oregon
- Dr. David Simpson, Neurologist (MDA Clinic), Garden City, Michigan