Mini-Update (Updated as of Sunday 1-19-2014)

To be fair to all my well wishers, instead of keeping everyone in dark, will pop in, from time to time, to give brief updates, if there is something to report.

Today, met with the new neurologist.  Got good vibes from him, could tell instantly that he was both thorough, caring, and very empathetic.  Spent over an hour talking one to one.  He had talked at length prior to my doctor, and had a copy of my very thick medical files.  Gave me a full length physical of all my joints, strength, range of motion, etc.

Bottom line, he feels there is something majorly wrong going on, especially below my waist.  He said I had both a horrific and complicated medical case to work with, but assured me, he will not give up, until he can get to the bottom of it, feels some major neurological problem has risen to the surfaces, undoubtedly triggered by the radiation damage.

On the surface, prior to actual scans/tests, he pretty well ruling out MS or PD, but feels there is evidence to support a dx. of either CRPS or ALS-Lou Gehrig, but too early to say for sure.  His greatest concern was in how fast this is spreading through my body.

For starters:  Friday, I am have a complete brain MRI, have had many MRI's, but never of my brain.

Next Tuesday, first I am having an EEG, looking at brain waves, then two hours later, having the full version of the nerve conduction tests.

Wants to leave all meds as they are, until he gets a better understanding of what is really going on.

Will report again sometime next week, perhaps after I meet with the VA doctors a week from today.

Thanks

Post Edited (Purgatory) : 1/20/2014 7:39:34 AM (GMT-7)

Well, I'm rooting against ALS. That's one thing nobody wants to hear from their doc--and I'm speaking not just as a Red Sox fan--that's one instance where even I would root for a Yankee.

Jim

David,
Thinking this over again, you have a lot going on. I hope your able to decompress once in a while. With everything that was thrown at my father when he was going through similar bouts, he would like to go to the movies once in a while, or at least rent a movie. Helped take his mind off things for a short while. Hope you can do the same.
Take care.

David--Keep the faith, baby.

Thanks for the update David.He sounds a good guy to have in your corner. Great that the scan was arranged so fast, especially at this time of year. Best wishes.
Bill

Clearly a lot of people praying and hoping for 2014 to be a turnaround year for you, David, and we're grateful for the updates! (as well as any violations of your self imposed ban!).

Happy New Year!
Mikey

Purgatory, also wishing and hoping and praying for answers to the multiple problems facing you. Trust you had a quiet and reflective new years eve. I was tucked in by 7pm, my norm, with the obligatory wake ups @ 1130 and 230 for pee breaks. Had a little, well, a bottle of the bubbly as the late afternoon and evening progressed. Off to the north shore this morning to test out new surf board on a bit of the wobbly, that occurs there this time of year.

David:

Glad you are still posting.

Hopefully, this doctor will get to the bottom of it.

If not, isn't it time to go to a big center, like Mayo?

In fact, they also do the super scans you were talking about.

 

Mel

As always, you're in my thoughts and prayers.

Take care of yourself.

Peace,
Andrew

David, I hope that you will finally get some answers. I know how anxious you are to getting to the bottom of your troubles. You have suffered long enough. I'll send a prayer your way. Hopefully the new year will be a good one for you.

Hey David,

I'm glad you now have the neurologist. I hope you are able to stay connected to HW. You have a lot of friends who care about you many of whom you have supported over the years.

I pray the new MRI will give you the answer to what's going on. I really don't think it could be ALS from what I've read.

Best to you, David.

Robert

I had a brother who had ALS/MND which popped up shortly after he was diagnosed with breast cancer. He had his nipples removed and shortly thereafter ALS/MND surfaced. It started in his legs.

He was a medical doctor, played rugby, ran the Boston Marathon a few times and was Dx in 2001 and died in 2008. The cause of this disease is not known, but there are indicators that trauma to the body triggers ALS/MND in some.

Take care! I sincerely hope that your diagnosis is not ALS/MND.

PSa,

thanks for the info you provided. The reason that CRPS and ALS are strong suspects, is because of the sheer amount of trauma my body has had the past 5 plus years. Including 9 surgeries, and the extreme severe damage from the flawed radiation. That and the fact that my body has been fighting severe chronic pain for over 3 1/2 years. The neurologist is more concerned about ALS, because among its odd symptons, weakness in the hips/trunk, unexplained "dropping", weight loss, speech slur, etc, are among some of its trademark calling cards. I have all of the above, and other neurological indicators. He's not saying this is what is is, just highly suspect. I hope and pray not, because its 100% fatal. At least I wouldn't have to concern myself about my advanced PC anymore.

CRPS would explain the spreading pain, but wouldn't explain my hips giving out and the other symptons from above. Still, it may not be either of these, but its quickly becoming a short list. Regardless, even if it is the worse, I want to know. So that I can be treated properly. And so that I will have an idea of how much life I have left to live, and choose how I want to live it.

Thanks,

David
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Diane,

My thoughts and prayers to Peter, as if he didn't have enough to deal with, now the fistula, and now colon cancer, hope its a small amount in early stage, then it could be very treatable. Keep us posted.

David