First visit to ALS Center

[sigma35]

Hey Everyone,
I finally went to my first session at an ALS Center, and I came away with very mixed feelings. The people were very nice, and most gave me a lot of info. It was when the staff Nuerologist came in that I now feel a little lost. I was diagnosed May 1st 2009, and at that time it was by 3 different Doctors, one being the head of ALS research at Colombia University in New York, that told me I had the disease.
The ALS Center Doctor also said she was pretty sure I had ALS, seeing that I have most of the symtoms (my twitching is getting pretty bad) but is sending me for a ton of new blood work, another MRI (my last one was to initially see if anything in my spine was causing my leg weakness) and she wants another EMG done. She also asked if I was ever checked out for HIV. What does that have to do with ALS? The Doctor also wants me to start taking Rilutek, but after searching on this forum, I really don't want to do this. This ALS center is affiliated with a local teaching hospital, and when I left, my wife and I somehow feel we are being used to further thier research, maybe because I seem to be in the begining of the disease.
I have been living with this diagnosis for well over a month ( alot shorter than most of you, and I am very sorry for that ), but I have accepted this, and want to move on with my life...I don't want someone dangling a " We Could Be Wrong " carrot in front of my face. Oh, and by the way, my Wife went to a support group at this center, and they told her that it seems that War Veterans seem to get this disease more frequently than others (which I am not), and that a lifetime of eating tuna could also be a possible cause due to the high levels of Mercury found in it.
Any input from you wonderful people would be greatly appreciated.

Thank You
Bob - Sigma35

 

[Connie]

Hi Bob,

That sounds like a stretch to say tuna is causing your problems. As far as Rilutek, I know there are varying opinions, but my husband is taking Rilutek and it has nothing to do with research or anyone making money and he is happy taking it even though it may have limited benefit. A month longer to live is better than none..

 

[BethU]

Bob, I'm sorry for your diagnosed. It's good that they are still doing more tests, as you need to rule out everything.

Every time I go for a clinic follow up, they ask permission to draw blood for their research, and I'm always glad to comply. This week, they took seven or eight tubes. I figure anything I can do that helps ALS research is all to the good. I'm sure they will get your permission before doing anything that is purely for research, and not for your sole benefit.

You are handling this very well. I didn't at first. What I discovered as I got further along was that managing ALS is mostly a problem of logistics. You can't do daily things the way you used to, but you can find other ways to get them done and still keep functioning. You need to prioritize and conserve energy and take care of your ALS needs: keep your weight up, avoid stress, don't try to push yourself physically beyond your limits. Things take longer to do with ALS, and that's just the way it is.

Welcome to our community.

 

[sharonca]

Bob - It's good that the doctors are still searching. I would want them to be really sure of the diagnosis. As for Rilutek - I took for a couple of months but after that didn't bother - too expensive. Just so you know - any Veteran with ALS is considered service related - this can be a huge benefit. Beth is right, keep weight up and don't push yourself physically.
Sharonca

 

[sigma35]

Thanks for the feedback. I promised my wife I would take any tests they want, as she is my rock in all of this. It's so wonderful having people in your life to push you even when you don't want it, I would probably have not even gone to the ALS center if not for her. I still work, and sometimes it can be a very physical job, but my co-workers are also watching out for me...whether I let them or not. If all of these tests can prevent someone else from getting this disease, who am I to hinder that ! This website is filled with very caring " PALS ", and I thank you all for the support.

Bob

 

[swi71]

Hi Bob--
Sorry to hear of your diagnosed and of the uncertainty. My husband was diagnosed with ALS in 2002. He took Rilutek for several years, but had to stop because his liver enzymes went up. The drs told us that he would only live 3-5 yrs, but he is still here (he has bulbar onset and FTD, so he can't communicate now). We didn't get to go to many support groups, but in the one we did attend the speaker felt that Rilutek may have added years, not months, to some who had taken it early on. I'm not sure if this is why Gerald (my husband) has not progressed as quickly as the drs thought he would, but I can't rule it out completely. Good luck with your other tests.
Sharon

 

[Big Mike]

There seems to be a lot of exceptions to the "3-5 or 2-5 years" prognosis at diagnosis. The docs just go by the standard medical textbook prognosis.

 

[DgtofTNfan]

Bob,

Are you a veteran? If you are, there are extensive benefits that I am still learning about for my father including monthly compensation. ZenArcher here is an excellent resource and I would be more than happy to help if this is relevant for you.

Dana

 

[sigma35]

No, I'm not a Veteran, but when I went to a Lawyer the other day to make sure my affairs were in order, she told me that living in N.Y. is a good thing, benefits are a lot easier to get. I'm not as financialy screwed as I thought I was. As for all the testing, I told my wife that I really am getting tired of all the poking and prodding. Today was the first time I have been this depressed since my diagnosis. I know I need to do this...but I am sure I will not see a pot at the end of the rainbow.
Thanks again, but right now I need to get my head in a better place.
Bob

 

[Zaphoon]

Hey there, Bob!

Every time I see or hear the name, "Bob", it reminds me of the guy in the enzite (sp) commercials.:lol:

I'm with the others that would like to encurage you regarding your current diagnosis. I think it is wonderful that the ALS clinic neuro is not yet satisfied that the diagnosis is rock solid just yet. I'm all for letting them stick me, zap me, drain my fluids from me and slapping me around when necessary if it will help them come to some other conclusion than ALS (PLS in my case).

Hang in there, Bob!:smile:

It can always be something else until it can't be anything else!

Zaphoon