NeverGiveIn22
New member
- Joined
- Aug 11, 2008
- Messages
- 4
- Reason
- PALS
- Diagnosis
- 08/2008
- Country
- US
- State
- Washington
- City
- Vancouver
Hello, I am new to this site after spending the past couple months on daily strength I had a friend suggest this forum instead. The DS board was like a Ghost Town and not much activity in the way of information.
I just completed all necessary tests, and finally got my diagnosis. I am extremely lucky thus far with most of the damage in my left calf and left shin. Overall I have not lost much strength in other parts of my body.
The first doctor who was an arrogant jerk told me that I was dying, and I told him duhh, we are all dying. He said there was nothing positive for me to look forward too and to get my affairs in order. I left that room with strong intentions of walking back in his office in 30 years and telling him thanks for the motivation.
Of course I'm on a bunch of medications (Baclofen, Rilutek, Valium (cramping), tazanodine) through my ALS specialist. She is a 10 and very open to whatever I choose as she calls this a disease. For me personally, I call this a challenge and I know you've read this a bunch of times, but I WILL WIN THIS BATTLE!
I'm doing alternative medicine as well and acupuncture along with Cord Tablets has really given me some energy. I'm not nearly as tired and do not require the 1 hour nap like I did in the past. I had a hair test completed and am full of heavy metal toxins, (mercury, lead, candium, arsenic, aluminum). So here in the next week or two I will start a detox program with the naturopath doctor.
I am scheduled to start the Rilutek/Lithium combo here in the next week or two. My clinic has patients who are not eligible for the trial that are reporting their symptoms have slowed down, other say their symptoms have stopped, and some are reporting their starting to improve. I'm really excited to start the program.
On a second opinion with another ALS Specialist, he told me that stem cell is the cure, they are trying to figure out if they can replace stem sensors in the body or they have to use a full stem cell replacements throughout the body. He says this is very promising except the stem cells only produce today at about 1 mm every 24 hours. he says the sensor portion of nerves if they work could be an immediate fix. This is all in the works, so I haven't got my hopes up at this point.
I'm excited to get to know each of you and please understand, I AM GOING TO BEAT THIS DISEASE as the doctors call it! For me it's another challenge in life.
I just completed all necessary tests, and finally got my diagnosis. I am extremely lucky thus far with most of the damage in my left calf and left shin. Overall I have not lost much strength in other parts of my body.
The first doctor who was an arrogant jerk told me that I was dying, and I told him duhh, we are all dying. He said there was nothing positive for me to look forward too and to get my affairs in order. I left that room with strong intentions of walking back in his office in 30 years and telling him thanks for the motivation.
Of course I'm on a bunch of medications (Baclofen, Rilutek, Valium (cramping), tazanodine) through my ALS specialist. She is a 10 and very open to whatever I choose as she calls this a disease. For me personally, I call this a challenge and I know you've read this a bunch of times, but I WILL WIN THIS BATTLE!
I'm doing alternative medicine as well and acupuncture along with Cord Tablets has really given me some energy. I'm not nearly as tired and do not require the 1 hour nap like I did in the past. I had a hair test completed and am full of heavy metal toxins, (mercury, lead, candium, arsenic, aluminum). So here in the next week or two I will start a detox program with the naturopath doctor.
I am scheduled to start the Rilutek/Lithium combo here in the next week or two. My clinic has patients who are not eligible for the trial that are reporting their symptoms have slowed down, other say their symptoms have stopped, and some are reporting their starting to improve. I'm really excited to start the program.
On a second opinion with another ALS Specialist, he told me that stem cell is the cure, they are trying to figure out if they can replace stem sensors in the body or they have to use a full stem cell replacements throughout the body. He says this is very promising except the stem cells only produce today at about 1 mm every 24 hours. he says the sensor portion of nerves if they work could be an immediate fix. This is all in the works, so I haven't got my hopes up at this point.
I'm excited to get to know each of you and please understand, I AM GOING TO BEAT THIS DISEASE as the doctors call it! For me it's another challenge in life.
