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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.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
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Country
US
State
pennsylvania
City
philadelphia
Hi,

Sorry about your diagnosed.... Yes, this is one of the best forums. You will meet lots of great and inspiring people.
You seem to have a great outlook which is very important. I can't believe the first dr gave you your diagnosed the way he did, some drs are just total jerks and not compassionate at all.
How long from start of symptoms until diagnosed?
 

NeverGiveIn22

New member
Joined
Aug 11, 2008
Messages
4
Reason
PALS
Diagnosis
08/2008
Country
US
State
Washington
City
Vancouver
I tore my ACL about three years ago during a full-contact charity football game. I opted not to have the surgery and this past year I started slowing down with my walk. I figured the ACL was the issue and went in for surgery. During the surgery my other left started shaking and they couldn't get it too stop. The rest is history.

Yeah, the first Doc was a jerk, and the only reason I didn't knock him out was because being a police officer I didn't want to lose my job! I'm past the anger now, completely devoted to winning this challenge. I refuse to give up, and my ALS team (docs, nurses, family, friends, etc.) know that "slowing down the progression" is not my goal. They know that I am 100% committed to winning, and winning I will! If you're not in my corner to win then you're simply fired!

Round 1 was a draw between ALS and I. I just got checked and have not got worse nor got better! This next round I'm coming out swinging! I'm not expecting an easy fight, but will say by this October things will start changing for the better. This is my goal, to get rid of the limp and continue forward! I'm a stubborn Italian, and I'm not completely convinced ALS.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
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New England
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Anytown
Well, welcome to our little corner of the Internet. I am sorry to hear about your DX. Interesting that your doctor is hopeful about Stem Cell implants. I wish the research was going faster! We had some PALS intent on going out of country for this treatment but none of them ever write back with good results.
 
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awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
Never gine in!

I love your atittude and that is everything! I wish you the best of luck and determination. what ever you do that works or does not, please post. When someone is battling it can help others. I love your approach.

best wishes.

april
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
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philadelphia
Never,
I forgot to ask what are cord tablets?
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Hey Never,

Yes, welcome to our forum-it's a great bunch of folks! I do like your attitude-that's where we have much in common! I am constantly telling people that I hope my ALS is the kind with the 30 yr warranty!

I have been on the Rilutek/lithium combo since 7/4/08-not thru the study since my neuro isn't in the study yet. I also am seeing a naturopath, having my silver fillings removed from my mouth a few at a time, and we'll see how things are when I go back to the ALS clinic in Nov.

Keep talking,
Keep the faith,
brenda
 
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