Recent content by debra6004

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.

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...

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...

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.

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?

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...

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...

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...

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?

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...

Once you receive the diagnosis of ALS from your doctor(s), you can decide when you wish to go on disability. I was diagnosed in Oct. 2011 but I either have slow progression or some other type of motor neuron issue. I am still working but may decide to go on disability some time this year. I...

I still have the diagnosis of "probable ALS" and at my last visit the drs. said there were red flags that I don't have it. However, I have progressed from cane to walker to scooter/wheelchair. I just got braces and can walk a short distance with my walker. Anyway, my point is that I don't...

I've been checking out this forum occasionally to search for items of interest. The only issue I see is that a lot of the blogs are from 2010 or 2011, sometimes older. I hope there are some recent blogs to check out.