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bhyatt32

Member
Joined
Apr 24, 2012
Messages
22
Reason
PALS
Diagnosis
04/2012
Country
US
State
NC
City
Louisburg
Hello everyone. I was diagnosed 1 week ago today with ALS. I have so many questions, but one that is haunting me is that I had a L5 spine surgery last June to repair my drop foot (left). The surgeion said that the nerve was so bad he had doubts that I would walk again without my foot drop. Now I'm 9 months past, had an EMG on the left leg and arm (having twitching), and have been diagnosed. Through my reading (and there's been plenty), the Mayo Clinic list foot drop as their #1 symptom. My question, did my ALS start a year ago when I presented with foot drop, or are the twitching, cramping, and intermittent slurred speech that I have now the beginning?
Also, can someone give me opinions on Rilutek? I've heard both good and bad and I'm very leary of filling my prescription.

Thank you.

Bob
 
Welcome aboard , Bob. So sorry about your diagnosis.
There have been many discussions about the drug here on the forums. You can use the search engine to locate previous threads on this subject.
You can also scroll down to the bottom of a page where links to similar threads are listed.

Many do take it without side effects. It caused my liver enzymes to go up so I had to discontinue it after 7 weeks.
 
I'm sorry you have cause to seek us out. But this is a good place for support and some answers. I wish I could answer your question about when your ALS began but I cannot. As for Rilutek, I do not take it myself and have read from users and past users every type of answer that you can imagine. Some people are glad they're taking it and feel it helps slow progression, some people felt ill from it, some people aren't sure if it's helping or not but take it just in case it is. My Neuro says if it were her she'd take it just in case it does work. Testing showed that it does slow progression somewhat. Someone here that knows more can shed more light on it for you.
 
I also had fusion, both cervical and lumbar. I think they were simply happening at the same tiem as the ALS was progressing as the affected areas got a little better for a while after the surgeries. I think they gave me more time.
 
Wow. I didn't expect so many replies so quickly. I thank everyone for the comments and suggestions.
 
bhyatt, So sorry about your diagnosis, You will find wonderful people hear to help you on your new journey. I had cervical surgery plating & screws c5/c6 they thought it would help me. Did not but they tried ruling out all else.
 
I had cervical plating as well, it's not all that uncommon. As they search for reasons for weakness, find a spinal indication, fix it, and the person actually has something else causing the weakness. It's the normal progression through the medical specialties, each think they have the answer, but they can be wrong!

Medicine is far from an exact science, and surgeons love to cut!
 
Bob,

Welcome to our family. Sorry you had to join. I don't take rilutek so I can't answer that question. Are you being seen at an mda/als clinic? If so, when do you go back? The reason I ask these, is because they are the only ones to really answer that for you.

Now to the real reason I think you asked that. Are you trying to figure out where you are on the 3 to 5 year timeline? I don't want to sound bold by that and I don't want to sound harsh with this, DON'T! That is an average. We have family here that have had it for over 5 6 or 7 years. And then we have some that don't live a year. So for your sanities sake, its just a number! Plain and simple.

I hope I didn't offend you, I just care about our family members. I took the dark path almost a year ago. Its not pleasant, believe me. Ask questions, a lot of questions. Someone will have the answers for you. And if you're married, ask your wife if she would like to join. I'm sure she would have questions too.

So again, welcome.
 
Thanks so much for the frankness. I didn't ask that question for that reason, but yes, I am wondering where I fit into the statistics. Are they going to be able to tell me based on tests from my first visit (baseline readings)? Yes, I am attending an ALS clinic. I was asking about the Ritulek to see if anyone can give me definitive (that's a great word with this disease) reason to take it. I will get my wife involved, and I thank you so much for caring.
Bob
 
gotta say..i read somewere, that, mnd can be the source of the spine prob in the first place....makes sense when yr unknown spasticity is pulling on the joints..arthritic things are gonna happen..bit of the chicken and the egg syndrome.....but wat do i know i got no sense..so me missus ses...johnny
 
I would say to only take Rilutek if it does not create a financial hardship. If paying the copay means going without something you and your family enjoy, do not take it. In my ALS journey,(going on 3 years, and hundreds of PALS and CALS friends) I have NEVER heard anyone say that for sure the got any benefit from it at all. Ask about doing some of the trials, and also ask about getting the Diaphragm Pacer.
 
Unfortunately, I don't think anyone here can say where you are on the timeline. Or would want to speculate. The doctors may but instead of focusing that way, I believe CGARS said it, we do everything just in a shorter time frame. And if it was someone else, please let me know. As you know, no one is guaranteed tomorrow, so start the living process. We are all LIVING with ALS.
And like Sadiemae said, ask about the med trials.
 
Bob,

One week in. I know how rough this is. Welcome. It gets better. Attitude is everything. Focus on LIVING, not on dying.

Re: foot drop. You already know the answer.

Re: Rilutek. It's overrated. Take it if your copay is small and keep taking it if there's no side-effects.

Sorry if I'm a little blunt today. I'm in a mood. Usually not like this.

God bless,
-Tom
 
As for Rilutck, my wife took if for about 6 months and had horrible side effects. Since the maximum life span increased with Rilutek was so minuscule (6 months or so) she declined to take it anymore. If I had bad sides effects, I would not take it. Unfortunately, you will have to come to the realization that you have a fatal disease and unless God heals you, you have 2 to 5 yrs. We all will die one day. Even if you live to 100 you will be so feeble, that you may wish you were dead. All of us are living in shells. The real us is our spirit that will one day be with God or not. Now is the time for salvation. Accept the greatest Jew in the world as your Savior Jesus Christ. who said, because I live, You will also. He faced death for all of us and triumphed. He, like Paul says, has taken the sting out of death. Accept him now He is the WAY, the TRUTH, AND THE LIFE. He knows the numbers of hair on your head and loves you!
 
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