1. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her weight

    • Weight: 118 lb
    • BMI: 17.9
  2. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her symptoms

    BetterPanic attacks, Fatigue, Excessive yawning, Constipation, Anxious mood
    WorseShortness of breath (dyspnea), Pain, Insomnia, Frequent urination, Fasciculations See more
    NewCentral sleep apnea
  3. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik started taking Baclofen

    Dosage15 mg daily (was 10 mg twice daily until )
  4. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling good

    Sleep study results showed oxygen is good, I don't have apnea, and I have normal sleep patterns. So my sleepiness must be progression of my disease or over medication. No Bi-Pap needed. 

    6 comments from other members. Only showing public users' comments. Sign up to see all comments!
      3694 thumb
      janik about 3 weeks ago

      Yes, I'm retaining CO2 but not high levels yet. One of the reasons for my yawning and sleepiness during the day. Not enough to require any machine at night though. My pulmonologist just said to see my neurologist for a follow up since the sleep study showed no problems. As for breathing tests done this year and last, all results still within normal ranges -- though a slight decrease from last year.

      3694 thumb
      janik about 3 weeks ago

      I will check my PH level to see if it is acidic. I read my sleep study report and it says I have 4 episodes of central apnea on average per hour and insurance only covers treatment (Bi-Pap) if you have 5 or more episodes an hour. I will have to talk to my neurologist to see if he will push to get me one. My pulmonologist has given up on me right now. 

  5. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik became a 3 star data donor! star earnedstar earnedstar earned

  6. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her symptoms

    BetterEmotional lability, Depressed mood, Anxious mood, Pain
    WorseConstipation, Weakness in legs, Sweating, Panic attacks, Fatigue
  7. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her weight

    • Weight: 120 lb
    • BMI: 18.2
  8. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik completed the FRS survey

    • FRS: 28
    • mild Head
    • moderate Arms
    • none Torso
    • moderate Legs
  9. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik completed the QOL survey

  10. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her labs and tests

    • Creatinine, blood0.9 mg/dL on
    • Blood Urea Nitrogen22 mg/dL on
    • Chloride, blood105 mEq/L on
    • Carbon Dioxide, Bicarbonate27 mmol/L on
    • Potassium5.5 mEq/L on
    • Sodium, blood144 mEq/L on
    • Total Protein, blood6.8 g/dL on
    • Calcium, blood9.8 mg/dL on
    • Glucose, blood - Glucose level86 mg/dL on
    • Bilirubin Total0.6 mg/dL on
    • Aspartate Aminotransferase41 U/L on
    • Alanine Aminotransferase52 U/L on
    • Alkaline Phosphatase98 U/L on
    • Albumin, blood4.1 g/dL on
  11. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik completed the Mood Map survey

    • Function
    • Distress
    • External Stress
    • Depression
    • Emotional
    • Compulsion
    • Anxiety
    • Mania
  12. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling neutral

  13. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated the condition PLS (Primary Lateral Sclerosis)

    • First symptom: May 1, 1996
    • Diagnosis: September 1, 1997
  14. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik became a 3 star data donor! star earnedstar earnedstar earned

  15. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her profile picture

  16. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her weight

    • Weight: 119 lb 8 oz
    • BMI: 18.2
  17. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik started doing Stretching

    Schedule10 min 3 times a week (was 50 min 2 times a week until )
  18. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik evaluated Stretching

    • StartedJul 16, 1997
    • Dosage10 min 3 times a week
    • Effectiveness Slight (for Stiffness/Spasticity)
    • Side effects Mild
    • Adherence Sometimes
    • Burden Somewhat hard to take
    • Cost< $25 monthly
    • View complete treatment history
  19. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik became a 3 star data donor! star earnedstar earnedstar earned

  20. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik started taking Baclofen

    Dosage10 mg twice daily (was 10 mg daily until )
  21. Show more