Tuesday, June 4, 2013

Swing and a miss

Well, after 9 months, numerous phone calls, several visits to different independent doctors, and waiting for news, the Social Security Administration has made their decision. I have Advanced Progressive Multiple Sclerosis, it is bad enough to end my fire/rescue career, but not severe enough for me to be labeled as "disabled." So, no disability benefits for me at this tme. Fortunately, we kinda expected this, and I have had a law firm representing me since the very beginning. A majority of those who apply are rejected the first time around, so they will be filing the appeal and we will see how round 2 goes. Hopefully, we won't have to find out if the old adage of "3 tiimes is the charm" is true and round 2 will go more smoothly than round 1 did.

In other news, my doctor has been working hard with me to try and find a medicinal regimen that works for me. I will be honest, this process has been a bit scary and eye opening at the same time. We have discovered that I have a very high medicinal tolerance. It is scary because I have avoided drugs of all kinds my entire life. I don't even like taking Tylenol for a headache,. Granted,  way back in the day, and through peer-pressure, I tried marijuana which I never really enjoyed.  I found that "weed" gives me the munchies (I know,DUH) and because I was rather poor I would be unable to buy "munchie foods" when stoned. This always led to a dilema; spend the $10 for a "dime bag" (gives you an idea as to how long ago we are talking here) or spend the $10 on a pizza that the weed would make me want after getting high. I ended up deducing that it made more sense to just buy the pizza, and my waist line has always reflected that decision.
So, after several years of tolerating the symptoms of MS, to include terrible muscle spasms and almost constant body aches and pains, we began some work with various medications expeting an alleviation of some symptoms, or at least for them to be more tolerable. Since I didn't like the idea of medication, I wanted something very light and non-narcotic. We started with Motrin 800. It didn't take too long to discover that Motrin had absolutely no effect on me.  We then tried Toradol.  I have given Toradol IV to many patients who had a history of susbtance abuse recovery and were in pain and have seen it work very well for them, so my expectations were high. This medication had absolutely no effect on me whatsoever. Then we switched to Vicodin.
   I was afraid of the Vicodin at first because I feared having to rely on narcotic. We started at the lowest dose and when that didn't work we moved up to the next dose until we reached the strongest dose. I would feel the results for a day or two, and then nothing, back to normal. We then moved onto Percocet. Now, mind you that during this I was also taking 20mg of Baclofen (muscle relaxer) and up to 60mg of Flexeril (another muscle relaxer). Once again we started at the lowest dose and again nothing. Finally we moved to the highest dose, and still no results. We did discover that if I took 20mg of Percocet, I would feel a little high, but would also get terribly nauseous and would usually end up vomiting which I hate even more than muscle spasms.
  Now that we have spent several months moving through the doses of Vicodin and Percocet, we decided to try the same type of meds without the acetominophen base, leaving us Roxicodone at 10mg. Roxicodone worked well mixed with my 500mg of Soma for a few days. The problem is that because I take care of my kids during the day whilst my wife works, I only take my meds at night. This leaves me in pain and spasming during the day. This is when my doctor decided that perhaps a pain patch might work a little better.
  He prescribed for me Butrans 5mcg/hr transdermal patch.  I put the first patch on and that whole week I felt pretty good! Sometimes the spasms would still cause some discomfort and I would need the Roxicodone to assist with stopping them, but that week I really felt like my old self again, and I even had more energy. Unfortunately, that only lasted a week. Always too good to last.
  Once I finished the 4 week prescription of the Butrans at 5mcg/hr, he upped the dosage to 10mcg/hr. 

1 comment:

  1. Good luck with your search for the right meds. The 20mg of Baclofen 3xday work for me. I still have spasms, but they are tolerable.
    Not sure on what's up with your SS. I got approved the first time (without lawyers). I did have three doctors (my family doc & two neurologists)give me positive recommendations for approval.
    Keep fighting.