Second Opinion Soon, Any Advice?

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In limb onset, Andrea, breathing and overall "look" can be good for a long time. I'm sorry you had to lose the hope for a different outcome, but you two still have the opportunity for a lot of life ahead. Or, as the song has it, "don't stop thinking about tomorrow."

Best,
Laurie
 
Andrea, I don't blame you for feeling numb. When we don't know, there is always a chance. When we know, we know.
The hard thing from my point of view is there are no dates. If they could say 'by 22nd January 2019, you'll be totally wheelchair bound,' at least there is a timeframe to plan towards, to prepare. Living in this world of unknowns and many variables, albeit heading down the same path...is frustrating and sad.
There are many positives. Things, people, places are all appreciated in a way that's hard to describe.
Everyone here is on a different journey, but has an understanding of what you are going through. We are all here to support you and Michael.
Love and prayers to you both.
Janelle xx
 
I am sorry. It is cold comfort but it sounds like things are moving pretty slowly. I remember Michael was here for quite a time before diagnosis. ALS progress is not necessarily linear but a slow start is clearly better than a fast one. I always try to remember there are people who live with this for many years. And living longer means being around for possible treatments. Are you sticking with this clinic?
 
Thank you, everyone, for the kind words. And yes, Nikki, we are sticking with Cedars. They make UCLA look like a third-world facility (in my highly biased opinion). Yesterday, they had us meet with a woman about research opportunities. She will let us know which trials Michael is eligible for, a subject UCLA never even broached. It is her full-time job, if I understand correctly, to match patients with trials, wherever each might be. Praying for a cure.
Andrea
 
Glad to hear Cedars is good for you. Ask about the observational study of c9. I heard they are starting an arm there. C9 as you probably know is a FALS but it is found in about 15 percent of SALS. This study is trying to do 2 things identify people with c9 and follow their course. The hope is to compile enough data that when gene blocking trials start ( next year I pray) the FDA will allow that data to be a control and everyone in the study can have the real drug. What happens if you are not known C9 is they test you. If you are negative that is the end of your participation. If you are positive they collect some data. Aside from a couple of blood draws and 2 optional spinal taps it is pretty much just collecting data that they check during clinic anyway. The study has been going on at MassGeneral and a couple of other places for a year they recently got funds and added a few sites including Cedars. I have been in it for a year and it is very easy. There was no restriction on being in interventional trials too in the consent I signed
 
Dearest Andrea,
My feelings of numbness is still with me. My hubby was diagnosed in May this year too,and those first words coming from the doctors mouth were shocking. I cried and cried and then we both cried together, it's exhausting but it felt good to let it out. Those first couple of weeks are the hardest I think as they tell you there's so much to do. But one day at a time is how we deal with this. Running on no sleep, what to do next, so many things to think about. We are here in Long Beach and can talk anytime you want. You are not alone here on this sight. I'm so glad I found this sight, it gives me strength and understanding. The people on this sight are kind, selfless, an funny. When your ready, let us know so we can hold you and keep you uplifted.
Blessings Alana. Aussie Born, Cally Life!
 
Hi, Nikki. They drew blood yesterday for the C9 gene. Thanks for the great explanation of it. So, sounds like we should be hoping for it to show up, so we can participate in a gene-blocking study? I wonder if having it would make Michael's brothers more likely to get ALS. Or their kids. Not sure. His cousin had it, but we have been told that isn't a close enough relative to be of statistical significance.

Alana, thanks so much for sharing your story and your feelings and your kindness. Michael has been telling me about someone in Long Beach he's been corresponding with on the forums who recently got diagnosed. I wonder if he meant your husband. It gives me great comfort knowing you are close. I would love to meet up at some point, if you are up for it. It is so wonderful to be around people who really, truly know how you feel. By the way, I have been to a support group a couple of times, and found it very, very helpful. It is at the Veteran's Center (near UCLA) on the second Saturday of each month. And it is just for caregiver's, so we can speak candidly. (Not that we ever say anything that our loved ones wouldn't want to hear, to be honest.) It was because of advice I got there that we switched from UCLA to Cedars. They are a very informed group.
Andrea
 
They enrolled him in the study? Terrific. Testing positive is a 2 edged sword. He will get genetic counseling if so but there might be concern for brothers though a spontaneous mutation could start with him. It happened to a couple of people here. The good part is that they are working hard on c9. 3 companies are working on antisense formulations and my neuro says probably next year though I have heard that twice before. I doubt that the first phase will be " the answer" though of course I hope! There was a phase 1 of sod1 blocking a couple of years ago. It was found to be safe and had some biomarker response but no clinical effect
Just curious if a cousin also had ALS then one of Michael's parents was the sibling of the other PALS parent. Anything at all in those parents of neurological illness? C9 has some other presentations
 
Andrea, so glad you found this forum and so sorry about the confirmation. Glad you made the switch to Cedars from your description. Your husband isn't a veteran by any chance is he?

We were numb too, when my pals got his DX. Then we went about living and visiting his wonderful children in MA & NH. I would read some on this forum then go away. Then come back, often at 2:00 or 3:00 am. This forum has been so helpful and its members are the kindest and best.

Sherry
 
Hi, Nikki. Michael's mother's brother's son had ALS. His mother is fine, don't know if her brother (the PALS's dad) had any type of problems.

Sherry, Michael did serve, but in the Army Reserves, for less than a year. He was a medic and paratrooper. Don't know how he did all that in under a year, but unfortunately he did.

Getting a test for copper deficiency soon. Anyone have any experience with this? Boy, would that be a dream come true if that was the problem!
 
My understanding is, you can be in the reserves but have to meet the continuous 90 days active duty threshold. Worth checking on ebenefits. Steph
 
I would call your local PVA (Paralized Veterans Advocate - I think) office and ask them about your husband service. Have his dates and discharge papers handy. He may very well be qualified for exceptional benefits but the PVA could tell you if/what and when.

Good luck,
Sherry
PS, I think I'm still numb a year and a half later but it's getting me thru this....
 
Thanks, everyone, for the kind advice. We will request discharge papers. He still doesn't think he qualifies, but worth a shot. That would certainly be lovely.
 
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