ALS, new treatment

[jody13]

my doctors and over $7000 worth of test have coviiced the doctors that I haxe the begining stages of ALS, which is The Legionares desease.  They want me to go on a trail drug that might cure it?? I go up tomorrow to find out more about it. it reguires 12 weeks the first stage and 28 weeks the second stage. I have to sign some papers and take some more tests. Makes you kinda wonder if it is all worth it. Sounds alot like TX to me. They claim no side effects, but some nausea mixed in. ALS is a serious problem  from what I hear. This treatment might help the "C" problem also, who knows Any way when I get started , probably Thrusday after another spinal tap. I let you know how it is going. I never do any thing half ass, so now I have ALS and Hep C.  Just for the hell of it I think I'll just beat them both. I not ready to call it quits. The trail is free to me and the doctors are too as soon as I get on the drug. I don't like any drugs. Jody

[Squeaker1]

Jody,

I lost my best friend in the world, to ALS, almost 3 years ago.  She was the most outstanding person that our good Lord could have put on this earth.  When she passed away, She had her body donated to the reasearch on ALS.  They were thrilled to death because the figured they would be able to find a lot of important things out with it and she wanted people to be able to be cured.  I am praying that maybe this treatment is maybe a result of her gift.  I pray that you make it through the tx and kick both HCV and ALS butts.

Hugs, Squeaker

[Ella]

Jody, do you have any idea what these drugs are called?  I really hope they will be the answer to your problems, but I would read over the papers very carefully before you sign them.  Making sure there are no little phrases in them that release the pharmaceutical firm who provides them from any responsibility in the case of any adverse reactions.  (Financial and otherwise)

Keep kicking those butts Jody.  From what you've written so far, it sounds like the docs are still not sure that you have ALS - even after so many tests.  Apart from your arm, do you have any other symptoms? Whichever way it goes, may good luck and good health go with you.

[Snowflake]

Jody,

I have been doing alittle looking to see what ALS is, is there treatment and what research is being done. I found one site that says  the FDA has approved the first drug treatment for the disease, Riluzole.

Here is that site: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/amyotrophiclateralsclerosis.htm

Then this site is about research they are doing with lithium in a clinical trail: http://www.alsa.org/

I don't know if you even want to bother checking these's sites out... Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease.

But, i wanted to let you know my heart goes out to you. And, i wish you and your family the Very Best in whatever you decide to do. You sound like one tough cookie and you never do anything half ass... That is the attitude that will get you though...

P.S. Ella, has some good points...

TAKE CARE
 Winona

[jody13]

I went back to the ho[pitale for more book work and some testing so I can get on the new drug. I have no idea if I made it or not. I meet another younger fellow that had the same problems as me but he has had it longer. He didn't get in the same test group as I'm suposed to.  But he did get in another trial test. So I'm to go back Thrusday or Friday frr the beginning of the testing It is a 36 week deal, double blind test. Jody

[Helen]

Jody,
 I wish you the best and will keep you in my prayers.
 We'll be here for you if you need us. I know theres not all that much we can do, but we can offer our support, lend an ear, and even research if need be like Winona just did. 

 Keep us posted and Take care, Helen

[jody13]

Treatment worries,  I wonder if this test is for cure or a extention of time like some of the others. And then another question came to mind ,if you go trhrough all the test, then what, are you cured or will you have to take high priced pills the rest of you life. The new fellow I met up at the hospital had had this for several years, 2 .5 I think he said. It is hard to pick a point to say "That rs When  I got It or knew I had it"  He was dianougsed 1.5 years ago. He is in worse shape than me. so it was a wake up call for me. I could see what I has to look forward to. The two drugs mentioned before , you can't be on them while on the trial. OH well Columbus took a chance  and look where it ended up.  So that is all I can report on till I get on the Drugs, I don't like the sound of drugs but I don't like the reports on ALS either. I would hope tha it could be done with alternitive meds instead.  Jody

[Squeaker1]

Jody,

I am seriously wishing you the best, no matter which way you decide to go.  You are a real trooper and you will do fine.  Think real seriously before you make your choice and then, which ever one you go for, go with "gusto".

Hugs, Squeaker

[jody13]

thrusday, Well after 8 hrs more and a spinal tap. I am now in a 36 week test. I took my first pills at 6 pm to day. I wasn't sure they would take me, but they did. There are 80 people on the test in the whole US and 5 of those comre from the Licloln area.  Me included. The caps I took did not do any thing yet.like make me feel sick??  Jody

[beember]

Well , i will pray for you evey day!!!  Having  Lou Gehrig's disease and hep c, wow what a compo.  God-bless you and your trials... Have you been on treatment for hep c?

[jody13]

Thanks  but actually I am in real good heath. My heart , lungs liver passed all the tests several timesI have my balance back, other than one weaker arm and hand I'm in top codition. The hep has never bothered me at all. I never knew I had it till I tried to give blood a couple of years ago and they told me I couldn't give blood be cause I had Hep C. But all and there were alot of them indicated I was in early stages of Als, Which they claim you can't cure. On that we will wait and see. I have taken nothing but herbs for any thing except a bennedryil to help with allergys. Jody

[Helen]

Jody, 

 Glad to hear you are not having any sides so far and hope it continues. I will be watching for your updates on how everthing is going.


 Take care, Helen
 

[jody13]

Last night was hell but I made it through it. They had me drink several cokes to refill the Spnial fluid they took out. Couldn't sleep, had  al little indigestion so I took some Tums. I slept about 2 hours last night. Sore back and leg cramps, probably from the Tap. I can't do anything for a couple days. Thats OK it is raining any way.  But at least I'm started. It cant be as bad as TX I hope. jody

[Helen]

Im so sorry to hear that jody.  Im thinking that alot of that was due to the spinal tap though rather than the meds. I hope anyway, time will tell.
  Hope you start to feel better soon.

  Helen

[Snowflake]

Hello Jody,

I sure hope you get to feeling better soon... Sometimes those spinal taps can be a bear. I had one many years ago when i had a baby. My expirence was not the norm, but it left me with problems and migraiins. But, everyone is differant and i am sure you will be fine.
Good thing it is raining, because you need to rest... From reading your e-mails you are not one to stay still...

Wishing you all the best...

TAKE CARE
 Winona