Search results

  1. D

    Newly Diagnosed

    I live in Florida and my legs are always cold, stiff, and swelling (especially in the feet). My symptoms are still primarily below the waist.
  2. D

    Question for those with sporadic ALS

    Crazy, huh? I'm definitely not doing anything else until I go on Medicare. The USF clinic says that Medicare pays for genetic testing. I checked into the $20,000 bill with ALS, but doesn't sound like they can do anything about this one. I go back to clinic this Friday, July 12th, so I'll...
  3. D

    family/Caregiver frustration

    I can relate! When I first started having problems with walking and falling, I was asked maybe I should pick up my feet higher (duh, I didn't think of that!). Also, maybe exercise or physical therapy might help. Okay, so I tried modified exercise, physical therapy, chiropractor visits, etc...
  4. D

    Arrested Progression.

    Yes, I would like to know the regime. I am currently taking the supplements on the Deanna Protocol and also coconut oil. I've dropped off some on the oil and AKG, as I am having an extremely hard time with digestive problems with both of these. I'm hoping what I take will still make a difference.
  5. D

    Question for those with sporadic ALS

    Also worried about my two daughters - both are having back issues and they are only 27 and 30. But if it is hereditary, would they really want to know?
  6. D

    Question for those with sporadic ALS

    I haven't been able to get genetic testing yet for ALS. My father had Parkinson's. My uncle has ALS type symptoms and was told 10 years ago he had it but also told a myriad of other things wrong with him. My aunt has neurological issues - primarily with swallowing and has been put on feeding...
  7. D


    I originally signed up for ALS registry and was recently contacted by the ALS registry, and was asked to donate blood, urine, hair, and fingernail samples for biorepository. They sent out a nurse, fed-ex'd the kit, and process took about an hour. No reimbursement, but will provide samples for...
  8. D

    Your Heritage

    Irish descent on both sides of the family - but I believe my neurological problems stem from my dad's side of the family. He had Parkinson's, my uncle was told he had ALS 10 years ago, aunt also neurological problems, and about 6 family members have had the L4/L5 back surgery unbeknownst to me...
  9. D

    Newly Diagnosed

    My friend's brother was able to get in about 3 months. I'm not sure if this is the case for all TERI cases for ALS?
  10. D

    Trying to figure this weakness out....

    I had back surgery in May 2010 after dealing with severe back pain for one year and on-going issues for years before. After the surgery, I started having balance issues in August 2010 and falling. I then developed drop foot. I went to several neurologists and had EMG's which came back with...