Trevor Bower

[Trevor Bower]

Since being diagnosed I have started to keep track of changes. As I progressed my sleep seems to be in two hour bursts. Leg cramps and need to empty my bladder. Needless to say, I am exhausted all the time. I can’t “catch up on sleep” no matter what I’ve tried. One item that seems to help the bladder issue is eating a bowl of popcorn before bed. No coffee after breakfast is another new rule.

[Trevor Bower]

So many ideas are floating around tonight. I was told by a prominent ALS doctor that I didn’t have one of the “S” diseases years ago. He said that was the good news. Years later after going through lots of tests and enrolling me in the Undiagnosed Disease Network I came through without an answer.  I still struggled on. That same doctor this past December told me I have ALS. He said it is a variant of ALS because it doesn’t seem to show up in the tests for  ALS. The more I read the more I’m finding this is not just one disease, it is not just genetic or familial, and it doesn’t seem to fit into a nice little pattern. We talk about associations and possible connection with ALS. It isn’t fitting into a nice geographic association or just genetic, or what we eat or drink, whether we or young or old. The one correlation that has been made is that people that were in the US military are nearly twice as unlucky as the rest of the US population to come down with ALS. Well, that still didn’t get us any closer to the cause or the cure. But it is something to work with, maybe.

[Trevor Bower]

My ALS team at Duke told me to slow down.” If you keep doing what you’re doing now you  will go down faster.”  It’s hard to quit doing what you have been used to doing all your life, but you have to listen to their wisdom. You can be there for your daughter but you need to get some additional assistance from friends, neighbors and professional organizations to help you both.

 

[Trevor Bower]

Mark,

Thanks for your insight and thoughtful comments about ALS. I can echo what you said. I’ve been through three medical systems here in North Carolina. They couldn’t figure it out, so the Duke doctors enrolled me in the Undiagnosed Disease Network. So many lab tests, exams, MRI’s and on and on  including two different universities  DNA Analysis with the conclusion that I do not have ALS. Finally,
I was given the diagnosis of having a new variant form of what appears to be ALS. So far it only affects me from the hips down. A plus.  I’m looking forward to your commentary Mark!

Trevor

[Trevor Bower]

Dagmar, most of my muscle twitching occurs when I’m in bed and lying ng flat on my back. If the twitching continues  I roll on my side and it seems to stop. Is this problem a positional issue with the alignment of my spine?

 

 

 

 

[Trevor Bower]

I can completely understand the struggle to keep positive. I’ve struggled for eight years with an “unknown issue” that slowly decreased my ability to walk. I’ve had every neurological test known to the best neurologists at Duke.  Dr. Bedlack finally enrolled me in the Undiagnosed Network, UDN. The UDN group could not come up with a reason why my legs kept getting weaker. Finally last December I received the Diagnosis.  They believe I have a variant form of ALS. It doesn’t show up on the genetic tests.  Devastating!  Right away, I want to see what testing and research is on going?  What shows promise? Should I try to participate in a trial? Is it safe? Are there dietary modifications I could make, I have Celiac sprue,  to slow or reverse the progression of ALS?  So many questions.  I’m sure I’m not alone. Where do I go next.?

[Trevor Bower]

Is there a definite correlation between insulin signaling and expressions of ALS? What if the ALS is not correlated with genetics? Is this possible?

[Trevor Bower]

I would be interested if I knew more details about the study.

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