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shelly0542

New member
Joined
Jul 7, 2011
Messages
3
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
TX
City
Dallas
I have been reading posts since December of 2010 and have just now gathered the strength to become a participant. I am hear as I have a family member who was diagnosed with ALS seven months ago. His doctor - who runs the ALS Clinic was very excited about his participation in the new Phase 111 clinical trial for Dexpramiprexole. He had all his testing done - and we were still moving forward. Then, he had his lab work done - he won't talk to any of us in his family about his progression or how he is feeling. He is very dismissive to all of us. As a matter of fact I just found out today that he had been disqualified for inclusion in the trial. I am assuming it is because of his lab results.

Here is my question, as hard as it may be to ask. My brother lives a homosexual lifestyle - is it possible that his elimination from the trial means that his bloodwork could be HIV positive? I know they tested him for that originally, but it was negative. I am just concerned as to why they were going to start him on the clinical trial Monday, and now he doesn't qualify because of his bloodwork. He won't tell us why.....

Concerned even more so now.

Can you have both situations physically?

Thank you for listening - I don't know where else to turn to ask such a sensitive question especially since he is not forthcoming about his physical status.....
 
Shelley, it could be many many things that showed up that could disqualify him from the trial. I have never done a study that actually tests for HIV, but they all ask the question of the patient, and if yes then the patient does not make it on the study. The most common exclusion blood tests tend to be raised liver function tests. Each study has an upper level of acceptability, usually they can not be over 2 times ULN, sometimes 3 x. It really could just as well be something simple, especially as he has tested negative to HIV in the past. He is probably very disappointed at the moment, maybe he will chose to share the reason with you, sometime along the track, but he may want to keep it private.

I know you care about him a lot, but it's not worth you worrying even more than you are.

Best wishes to you and your brother
Aly
 
Thanks Aly - it would be so much easier if he would just let us know - rather having to speculate....do you know if the liver function becomes affected by ALS?
 
Hi shelly, I just started the dex trial and there are several test to get in. Lung function was tough as well as my liver functions were high. They run all the tests the same day. The lung function was the hardest for me to pass. This wouldn't be something I would have wanted to share if I wasn't sharing other things in progression. That is just a guess, or another perspective for what it's worth.
 
Hi Michael,

My brother went through the lung test and an EMG - he also went in to fill out all the paperwork - and then the doctor scheduled him to come in this upcoming Monday the 11th to begin treatment - the only test where the results hadn't come in was the bloodwork.....which is why i wish he would let me know what it was in his bloodwork to cause him to be dis-qualified.

I noticed you were diagnosed about the same time my brother was. He is a bulbar onset patient. If you don't mind - may I ask if you experience anger which is directed at family members? My brother's personality seems to change and I feel like I am walking on eggshells around him. I know that is a personal question, and I apologize if I have made you feel uncomfortable by asking.

I wish for you every benefit of this new trial - I have heard such wonderful things about the results they are having. I pray you have success as well
Blessings to you and your family.
 
Thanks Aly - it would be so much easier if he would just let us know - rather having to speculate....do you know if the liver function becomes affected by ALS?

Why speculate? Ask him directly. If he tells you that it is none of your business, accept it as a valid reason for him not to tell you and move on. He doesn't have a right to be rude to you, but you don't have a right to be nosy with him either. He didn't qualify. It happens, even when doctors who should know better get overexcited and raise expectations unnecessarily. And speculating about it, especially behind his back, isn't a particularly kind, much less loving act. It's actually quite unkind, in fact.

What is the mysterious "it" that's going to be better if he does what you want? And who is "it" going to be easier for if he does come clean about it -- you or him? If you are so convinced you are on the side of the angels here, show him this board in general and this thread in particular. After all, he is the one who actually has ALS and is having trouble coping with it. There are a lot of us here that would be happy to listen to his side of the story and offer what advice and support we can from having walked our share of miles in his shoes.
 
Trfogey is absolutely right in my opinion. He has the right to keep things to himself if he so chooses. It may make it harder on you but you have to give him that respect right or wrong.
No my personality has not changed, I have a bad day here and there but have adopted the attitude that I will not waste time feeling sorry for myself or being angry. I also have bulbar onset and am almost at the point of loosing the ability to talk. I walk with an cane or canes but my legs are becoming weak very fast. I know it is hard on relatives too but he has to choose his own path to go down.
Liver function is to my knowledge not affected by the desease, but we are offered many medications to help with symptoms and they are all filtered out by the liver.
 
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