data

  1. K

    Exercise and ALS

    My first post, a combination of who I am and my thoughts on exercise and ALS. I had my first bad EMG last January, 10 days after a marathon. I was formally diagnosed in April and continued to run about 45 miles a week through June. Late June I ran what could be my last marathon, my balance...
    • KCAE
    • Thread
    • als balance data diagnosed emg exercise fvc improvement neurologist problem progression running second opinion
    • Replies: 8
    • Forum: General discussion about ALS/MND
  2. K

    Rilutek & Pregnancy

    Hello, My husband was diagnosed with ALS in February 2011. He is 35, I am 32. Recently we've been talking about the possibility of having a baby. Crazy idea, right? I'm wondering if anyone knows anything about the effect of Rilutek, if any, during conception and pregnancy & if there would be...
  3. R

    Fibro, 3xEMG=mild C6/7, -0 Vit. D, Raynaud's Feet and sudden Wasted Hand(s)

    I was under the notion that going in for a spinal tap would lead to a definitive Dx. After reading here awhile I'm afraid I may be laboring under a misconception. I have small, symmetrical lesions on the outer cord at C2/3 per MRI (not reflected on EMG). Upper unilateral EMG has long since...
    • Robinetta
    • Thread
    • advice age arm atrophy back clinic data early emg exercise fatigue fingers lead mri muscle oil progression reading slow progression stupid test vitamin d
    • Replies: 11
    • Forum: Could this be ALS?
  4. JTorm

    I'm HELL MAD AT....

    Those slow progressive PLS sufferers that appear on TV claiming they have ALS and were given the 2-5 prognosis yet you see them doing some mild excesises etc.... I have read and watch thousands of videos and medical data in regards to ALS that its strictly indicates that PALS live from 2-5...
  5. A

    Do I have ALS?

    Hi, This another one of those posts; first of all bear with me (and I thank you dearly for it) as I've read quite a lot of topics in this forum and I'd like an answer for my doubts; I am mainly asking since goggling gives either unreliable sources or mixed results. But first of all I'd like...
    • anotherone
    • Thread
    • als als? clinics cramps data do i have als do i have als? emg equipment fasciculations fatigue fibrillation fingers friend medical medical equipment mri muscle neurologist problem reading running second opinion symptoms twitching wanted weakness work worried
    • Replies: 3
    • Forum: Could this be ALS?
  6. lgelb

    Webcast links for Gleason Summit 6/27-28

    Note: Summit in Central Time zone (New Orleans). Day 1 https://www3.gotomeeting.com/register/740867726 Day 2 https://www3.gotomeeting.com/register/505585422 GLEASON SUMMIT Round Table 1 Disease Mechanisms for ALS Goal of Session: Highlight potential mechanisms in ALS, are they...
    • lgelb
    • Thread
    • brain chair conference data design early ftd health medical research robert stem cell support technology treatment voice voice banking work
    • Replies: 2
    • Forum: Research and trials
  7. Nighthawk

    Why ALS drugs tested on mice won't work on PALS.

    Found this very interesting post by someone at ALS-TDI Forums and wanted to share it so we can better understand the stagnation on ALS Research on finding a drug to cure this disease or, at least to stop its progression. The reason, the failed approach of testing drugs on mice instead on PALS...
    • Nighthawk
    • Thread
    • age als als research cure data drugs enzymes fals familial familial als food genetic testing hope mnd onset pals pressure progression research sod1 sporadic stress symptom testing wanted work
    • Replies: 5
    • Forum: General discussion about ALS/MND
  8. jellis86

    Question about Nuedexta

    I might need to contact my Dr but thought I would ask here first. I take many medications through my feeding tube, but Nuedexta is prescribed 2 per day by mouth. Each day it is becoming more difficult to take meds via mouth...my tongue seems to be too thick and pills are always sticking to it...
  9. E

    Updated list of known patients who reported significant improvements after propofol

    Updated list of known patients who reported significant improvements after propofol anesthesia. Patient: Cypress Improvements: increased dexterity, better speech and swallowing Dose: 1100 mg When noticed: same day Duration: noticeable regress after day 9 Patient: Jason Improvements: normal pft...
  10. E

    I urge every patient to help us get this risk/benefit issue revisited by tyou do not

    As an ALS patient this additional delay Seems to ignore many patient's willingness to take prudent risk. I am not searching for an improved acne medication. I urge every patient to help us get this risk/benefit issue revisited by the FDA "A recent review of the double-blind, aggregate data...
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