Recent content by Dylan

I was in part A, and I'm currently in part B of this study. Is there a way for you to PM me on the forum?

So, no PALS have actually tried s series of FMTs? Anyone know of any PALs that have?

Okay... I know it's been discussed a bit before in the forums, but not at length. But the more I read about the newly found gut-brain connection, the more I believe that a series fecal matter transplants could slow or stop some types of ALS progression. I know, call me crazy. Has anyone heard...

Sorry to hear this Vince. It's scary... In the last couple months I've lost the ability to walk without assistance and I've taken some spills. You're right, there's nothing you can do to stop it once you start falling. Loosing independence is the scariest part. I'm afraid to go anywhere by...

That's great you got out there! I normally spend most of September in the woods... but my shoulder is too week to pull my bow back this year. Gonna try rifle season instead and hunt from a four wheeler with a disabled tag. Good luck if you go again!

We have a long history of ALS in our family, dating back at least 4 generations (losses include my mother, grandfather, great grandfather, and many distant relatives). I was surprised to know that my family didn't have much documentation or research to pass along to me when I was diagnosed. My...

I'm currently screening for a clinical trial that requires lots of travel back and fourth to the research facility across the country. I thought I'd share that in this particular clinical trial, the drug company covers all my air travel, ground travel, hotels, and even $50 for meals a day. I...

Keep it up Steve! I'm an avid snowboarder. That looks like it was a great day on the mountain! Unfortunately I think I've made my last powder turns on my own, but I look forward to some pow turns in a sit ski next winter.

"Pre-filled" 30 25mg/ml syringes for $240 plus shipping from Lee Silsby. I'm injecting daily

I started mine with HopeWell. But they don't ship to Oregon and found that they have preservatives in them, plus they sent me the wrong needle size. I just contacted Lee Silsby pharmacy in OH. They are sending me profiled syringes starting in a couple weeks.

I was not tested. But my mother and her cousins that have passed were. I'm asking if I need to be tested in my email to the contact for the clinical trial. I'm hesitant to get tested, as I hear it can cause issues with life insurance. I'm looking into it further. Thanks again for the advice Nikki.

Thank you all. I didn't realize I had so many replies. I've been so busy doing research, doctors visits, and planning a family vacation... I haven't checked back to this thread. In my family research, I did just find out that my family has the SOD1 gene mutation. I also found out that a...

Just got my injections. I plan on doing them daily. But the pharmacy sent the wrong needles. I went in to have my neuro walk me through the injection site and process. He said I need a needle of about an inch in size, the needles I received were about 1/4 inch in size and wouldn't penetrate...

Thanks Nikki. I do not know my gene defect. Do you have any information about the trial that you can share with me?

My symptoms first started in November. I noticed some muscle fasciculations on my left thigh. At first they were persistent, then I didn't notice them as much for a month or so. I was very worried, as we have a long history of ALS in my mothers side of the family. We visited my father over...