Friday, September 25, 2009

My stupid shoulder

Well I wish someone was here to take a pic. of my shoulder. You've all heard me bitchin' about it and it's not getting any better. My friend Marie has it figured out as she has the same thing. She was patient #2 and is an RN and good researcher, and she figured out that it's a pinched spinal accessory nerve. Her, I and another patient all have had this so it seems like it's a potential complication that wasn't accounted for (if it even could be since it's endovascular) so I told Dr. Dake about it so that he's on the 'lookout' for it, but as I said, I don't know that he can do anything about it. The hole in the skull that the carotid, the jugular and that nerve go through does not have a lot of clearance and that's probably where it's pinched. The sheath that they're in is also tight and that could be it as well, but I think that would have abated right now and it being pinched against bone seems more plausible to me anyway. I hope I haven't bored you all with those specifics before. That's one thing about these postings; it's almost impossible to remember everything you've already written about, and my memory sucks so please bear with me. So it's been a week and I really not only feel obligated to post on progress, but I also don't want it to get away from me. The good thing about that is I didn't even realize that it had been a week. The reason that's good is that I've been busy at work, and the time slipping away as it pertains to something with MS is a good thing as it indicates I may be through over obsessing about it so much. Going into these uncharted waters really creates a dynamic where you are constantly thinking about what's going on with your health. When you're not doing well, that happens also as every head movement, every leg movement and even every eye movement are all a constant reminder that you are not doing well. Hey, I'm doing this so that I can go for days with out thinking about this. So it's off to get an EMG from someone called a physiatrist. I'll tell you though, I wish it was tomorrow. I was just going along my merry way when suddenly it clicked that Marie was trying to tell me that this was a big deal as serious nerve damage could occur if it's not getting oxygen. Well it finally sunk in and I hope I haven't waited too long. But it's pissing me off as the rest of me doesn't feel too damn bad, and that's good and I want to enjoy it!

I'm also trying a different oral drug that there is a ton of testimonial evidence on called Low Dose Naltrexone. It's a very low dose version of Naltrexone; a drug that is/was used for opiate addiction! I know that it releases endorphins and my brain simply needs all the help in the world to try and heal. Now I really don't know if endorphin release promotes that, so if you do, don't tell me! There really are some great stories of success using simply that drug. It's apparently very benign and has minimal side fx. When you start you can apparently not only dream really vividly, but also have some disturbed sleep, but the protocol calls for easing into it to help with that and is then dosed based on your weight. Regular Naltrexone for it's original intent was 50mg/dose. This starts at 1.5 then to 3 then to 4.5 and that's the dose you go up or down from based on how you're sleeping. I've also recently learned from the woman at that you can take it during the day now; it used to be thought you had to do it at bedtime but that has apparently changed. That webiste has a wealth of information on it, is easy to follow and all the links work, which is nice. SammyJo did a great job with the site. The probable reason for no trials (there may be one going on now, I don't remember) is that it's cheap because it's been on the market for so long. So there's no incentive to fund a trial. Sucks, but that's the way it works. So that should be here in a few days and I'll let you all know how that goes.

My golf tournament/fundraiser is coming up next weekend. I hope it dries out, it has rained non stop all week long and is supposed to go right up until Sunday. That's going to be quite the gesture. It's going to be like a chick flick in there if they make me speak; there'll be dudes crying and stuff. I used to speak in front of lots of people all the time for work. It's totally different now as it's such a totally different deal when you can't see. Don't know why or what that is, but I don't speak in front of people like I used to. I'm sure it's also got something to do with searching for the words and not just ripping it off like I used to. I will have to say something, but I am such a chick now. I'll come in during then end of something like "Terms of Endearment" and start tearing up not having watched a minute of it. Oh well, I just blame it on the MS... Well my shoulder is starting to yell, so I need to stop typing. Till next week...


  1. Feel better soon Lew!
    Hope the LDN helps you too, like it has so many with MS! There have been a couple of trials, 80 patients at UCSF for MS, which I raised 25k for with other patients, positive results but still pending publication. Also 2 yr study at Univ Milan, which has published 6 mo safety statement. But like you said, not much interest from pharma, they can't figure out how to make billion$ off a cheap generic drug. SammyJo

  2. Lew,

    Out of curiousity...what time did you get released from the hospital? I'm trying to book my flight home post-op and was wondering if there would be anyway to catch an 11:30ish am flight. (It is the latest non-stop one I could find.)

  3. Well getting discharged quickly is total hit or miss. From the time Dake cleared me to the time I could leave was like 3 1/2 hours. However, if you let you nurse know you have travel issues, they may take it into account. Morning discharge and shift change is a busy time for the RN's there.


  4. Thanks Lew. I just talked to Alex and she thought I'd be better off with the 3 ish flight. I'm bummed about the prospect of a layover, but it will hopefully be a less stressful time crunch. Thanks.


    Did you have your physiatrist (sp) appt today?

  5. Loved reading your blog. Thank you. I'll be starting LDN soon myself- cauciously optomistic. I just found out about the Venous info and will be following your blog closely. Be well and be blessed.


I've figured out how to get everyone to be able to post on here.