Introduction and questions

[smithl32]

Hello Everyone,

You guys can call me Smitty. I have been following the forum for about 4 months now. I want to say I have learned so much about the human spirit following you guys along this ALS journey. I have been diagnosed with ALS and the funny thing is once you realize you have this or MAY have this you can remember little things like tripping or clumsiness or whatever that you just ignored.

Well I have a lot of questions although I have been on the internet for months like many PALS looking for any shred of information on slowing down progression, a cure, some hope, something! I know this is a common course of action. Here are my questions.

Is Steven Shackel just a guy who had a slow progression? His website is so in-depth. Do any of these supplements really do anything? Ex. Cq10, antioxidents, etc….

Why are the doctors so non-supportive of other diagnosis? I have a small disc bulge and back issues they will not even consider. (The VA in Houston and Dr. Harati in Houston) Although it may not be an issue they seem so ready to take any hope away.

I am a veteran and I served in Iraq. I was also bitten by a tick in Tennessee while in the military. Dr. Harati quickly dismissed this can be Lyme disease. He said to stay of the internet. Why would he say this when they are testing Ceftriaxone which is used to treat Lyme disease?

I seem to have progressed faster once I stopped exercising.
I believe stress is one of the main culprits in this disease pre and post diagnosis.

I have been told that no one recovers or goes into remission; If someone claims this than they didn’t have ALS. I am sorry but I don’t think the doctors know much about this disease at all in my opinion.

Lastly although I have some amount of fear about the future, my experience with ALS has alleviated much some of the pain, animosity, and selfishness I have carried for years and I honestly wonder if this was the true toxicity in my body….

Smitty

 

[Phil M]

Welcome! Sorry you had to find us! Personally, I don't think you can change the rate of progression much other than Rilutek, and that is not saying much! I think it just has to do with your body. Keeping your body weight up is the best thing you can do. I too thought mine was tick related. I was bit by 2 ticks just prior to my symptoms. The bites swolled up, and I got a really high fever for about 24 hours. I went through Lymes treatment for about 4 months. Don't drive yourself crazy trying to figure out what caused it. Just try to stay busy, and try to do some of the things that you have dreamed about.
Keep your head up!

 

[hopingforcure]

Smitty,
Welcome, my nephew is called smitty, love that nickname. All good guys I know with that knick name. I am glad you found us, you sure sound like a insightful, and intelligent guy. We welcome you to banter, hope, and just be part of our family. Although I uTe that you are here, glad we have you to share with.. Jump in whenever.

 

[irismarie]

I think Phil is right, IT is a waste of our valuable time trying to find out WHY all on our own. Thousands together, we might come up with an answer.
But welcome, Smitty, an join the fun................
Irismarie

 

[handinhand]

Hi Smitty, That is what they called my dad.. Haven't heard it in a long time. I know just what you are doing ...Looking for some answer somewhere. I did this for a good month and took 5 pages of reserch in to my Nero .. He very nicely told me that if ther was anything out there for me to cure or help in any way he would be the first to give it to me. He didn't want me wasting too much time trying to find a cure and instead take the time to have a wonderful life with my family and friends. Make lots of great memories... Love each day .... We will be here when ever you need us. We are a family of very caring and helpful people, I hope you come often. L

 

[serenade]

Hi Smitty,
As for ceftriaxone it is used for Lymes and now in stage 3 clinical trial for ALS. I am in the trial now and progression is slow. There are openings if you have an interest in the trial. Sorry you had to join us but a positive attitude is the best start to dealing with ALS.
Judy

 

[indigosd]

Hey Smitty! Welcome to the brightest spot on this earth! "Steven Shackel"? Never heard of the guy. It seems most of us react in the beginning with a frantic quest to find a treatment, a cure...anything that may save us...but to my knowledge, as of today we still do not have even one survivor to champion us in this journey. It isn't that we lose hope or that we give up, we just settle into a new reality of acceptance and begin to honestly live the moments of our lives. That is truly all anyone has but most of the time we live in this blindness and put off living in the now because the "FUTURE" is going to be so much better. If you can still walk, talk, eat and breath without difficulty go out there and experience this life! Begin a bucket list, write letters to loved ones, make a video as a heart treasure for someone that you love, EAT everything that you never did because it was too fattening or not good for you, fly a kite, blow soap bubbles, become a powerful advocate for ALS-write letters to people in positions of power and demand that they help PALS AND CALS! Get your legal affairs in order-make a living will-arrange for your funeral and then get our there and LIVE! You should have no financial worries due to your VA benefits. Have you applied to the VA and to Social Security?

 

[smithl32]

Hi everyone and thanks for the warm welcome.

I am sorry everybody thinks im desperatley grasping for something other than ALS. I would not call it that I would just say I am making sure I am not leaving any stones unturned. I think everyone owes themselves as much as along as it is not all consuming.

I was really just wondering everyone else's thoughts about my questions. I totally undertand that the more important thing is to enjoy life. I am already doing so I have my first baby girl on the way due in July and that is keeping me positive along my with my dear wife.

Serenade,
I am actually interested in that trial. I just contacted them today and I am going to send them my medical info soon. I, like everyone else am hoping for a slow progression too.

Phil M,
I understand and thanks for sharing your experience.
Smitty

 

[smithl32]

Hi indigosd,

Thanks for the advice. I actually just got back from the Bahamas last month. I can still, walk, talk and eat ok, well the walking is another story...LOL...I am in college and I am going to be my families first graduate hopefully, if I can ever get my mind fully back on school...LOL. I am actually trying to live although my diagnosis is new I have been well aware ALS may be the cause along time ago.


I am attempting now to figure out what my place is in this new life. I want it to have more meaning than my previous 32 years!

Smitty

 

[indigosd]

SMitty, CONGRATS on the new baby and college graduation! Even more important that you do those things that I mentioned for this baby girl.
Did you get the 100% service connection from the VA?

 

[smithl32]

Indigosd, I am actually just got first diagnosed at VA couple of weeks ago. I am going to start paperwork next week. Does everyone immediatley apply for Social security?

 

[indigosd]

YES! You will need to endure the 5 to 6 month "Grace" period. You can actually do it online. Go to the SS website and you will see a checklist of what you need. Do it monday!

 

[indigosd]

What branch were you in? I am guessing Air Force.

 

[smithl32]

I was in the Army. If I apply for social security then I was told I cannot work. What if I have a slow progression and have the ability to work? I miss working in a way..LOL...am I being too optimistic...LOL

 

[halfin]

Welcome Smitty!

Social Security Disability is for when you are too disabled to work. Depending on what you do, how hard it is, your health and how much you enjoy it, you may choose to keep working for quite a while. I do software and work from home so I am still at it 9 months after diagnosis.

I know the diagnosis is hard to accept. I too had some spinal issues and hoped they might be causing my symptoms. Eventually with more progression I had to accept it. But there's nothing wrong with looking at other possibilities. See what happens. If it is ALS that will become clear in time. But this is a chance to really cherish those special moments.

We had a doctor on here last year who claimed that Lyme disease tests were unreliable and we should all get treated. Most doctors don't agree. You're right that Ceftriaxone is being tested as an ALS medicine, but it's not for Lyme. They screened a large number of candidate drugs on a tissue culture of ALS nerve cells and found some that seemed helpful. Ceftriaxone was one of the best. (There were no Lyme disease organisms in the tissue culture!) Actually my neuro told me that plain old penicillin was even better, but it does not get into nerve cells too well, so they are using Ceftriaxone. This treatment has nothing to do with Lyme disease.

Even so, I'm hoping to start the Cef trial this summer, and I figure if I do have any Lyme disease hanging around, that should get rid of it. Kill two birds, as it were.