akaal update

[akaal]

Hi everyone. I first joined this group in 2010 a few months after the passing of my oldest sister from fALS. I have stopped in now and then to read but have not posted much, so I will just give you a brief update of how things have been.

In February of 2014 both my younger brother and myself were diagnosed the same week. My brother died on February 15th 2015 at the age of 48. He started as a limb onset and progressed very quickly.

As for myself, I started as a Respiratory onset. I tire and fatigue easily and have difficulty speaking. I do use the Trilogy when I sleep or nap, but can function okay without it as long as I am sitting up. I have also lost muscle mass in my trunk area (chest & back) arms and hands and also my thighs. So far my calf muscles are hanging on so I can shuffle carefully from my chair to the bathroom using a cane. Although I don't know for how much longer. This disease is usually pretty aggressive in my family so, I'm a little suprised I'm still going. Not that I'm complaining.

Our family carries the aggressive SOD1 A4V type. Last I knew we could count 32 family members going back to 1903. Could be more than that now, I'm not sure.

I'm trying to keep this brief so, if anyone has any questions feel free to ask and I will do my best to answer them.

Peace;
Andy

 

[Nikki J]

Hi Andy
Thanks for the update. I know your family's history from your uncle's postings on FB

I know how horrific your mutation is and am happy you have done so well thus far. Given the family history, were you diagnosed early as I was? And do you/ did you take riluzole? I feel my early diagnosis and thus early riluzole has helped me be functional longer than my sister who was diagnosed later in the disease. Just curious, if you care to share...

Welcome back though sorry for the circumstances!

 

[akaal]

Because my onset (Respiratory) is somewhat rare, the doctors were looking at COPD because I was a smoker. However my lungs were pretty clear considering. I was also having trouble with fatigue which my PCP attributed to the statin drugs I was taking for high cholesterol. This was in the begining of 2013. By this time I was suspecting ALS but it took another year before I consulted with a Neuro, got a DNA test and was diagnosed pretty quickly.
I started Riluzole right away. I can't really say if it works or not. It didn't seem to help my brother at all. I do believe B12 (Methyl) is important and is helping. I take a B12 as well as a B complex that also contains more B12 (methyl). Plus I try to eat protiens as much as I can including 2 eggs every morning. (Which by the way also contains B12. Shellfish is probobly the best source.) There are studies out there about the benifits of B12 and ALS. Other than that I'm not sure whats keeps me going.

 

[Nikki J]

Thanks for sharing are you doing any methyl b12 injections? Or is it all oral? My sister did methyl injections at the beginning but it never seemed to do anything. But of course we are c9

 

[akaal]

No injections. I'm on hospice care and it's not something they would pay for. I don't know what the cost would be out of my own pocket? I just get it from natural sources. Food & supplements. It is my personal belief that B12 helps, possibly slows progression, but this is only my opinion. I have no real proof to offer you. There are some studies out there that show it may have some benefits to some PALS.

 

[Nikki J]

Thanks again. We have been discussing the Japanese study on another thread and a couple of people are doing the high dose injections

 

[akaal]

I should add that starting B12 earlier is important. It seems to have less effect 2-3 years after diagnoses according to a study I read.

Andy

 

[anderkling]

Andy, how sorry I am to read that you and many of your family members, including your sister and brother, have been afflicted with ALS. How very sad. You have had tremendous and unimaginable losses in your life. What you write about vit.B12 is interesting, as it's something I'm exploring right now. I wish you courage and peace.
- Charlene

 

[akaal]

Thank you Charlene. It is my opinion through experience and reading scientific studies that B12 (methylcobalamin not the synthetic cyanocobalamin) helps if taken very early on. At least for me. I can't speak for others who have tried this.

Peace also to you;
Andy