I need help with LDN information for my SS Disability appeal. This is my second appeal before the Federal appeal's council. I was found to be disabled, but they did not include the previous four years, the actual date of onset, so I am appealing the denial of those past four years or the alleged onset date Mentioned numerous times in the decision is the fact that I don't take any of the MS approved drugs, MS specific drugs, and one doctor even reported that the treatment I am taking could make my condition worse. Needless to say I strongly disagree. I've been taking LDN for four years now and don't believe I'd even be out of bed without it.
The problem with my disability seems to be the pain I experience on a daily basis, even the attorney representing me didn't believe me. Please understand that I do experience all the common sensations associated with MS such as numbness, burning, pins and needles, but I do not find these sensations to be disabling. What I experience is hypersensitivity. It feels like someone has sanded the skin off my hands and feet with 60grit sandpaper and that's on a good day, on a bad day it feels like they've used 40 grit sand paper.
Ok, so here's what the wonderful ALJ (administrative law judge) did in my case. He decided that the opinion of my neurologist and another doctor whom I met here on the forums carried less weight than the other doctors despite the fact that these two doctors are my treating doctors. Yep, that's right, this ALJ decided that he would give less credit to my neurologist, a prominent neurologist and recognized MS specialist in our area. Instead the judge gives more weight to the doctor who told me, "In my 27 years treating MS patients, I've never heard of anyone with MS experiencing the type of pain you describe, you must have some other underlying disease." Essentially as a result of this incompetent neurologist, the judge in my case has determined that I am a malingerer - faker.
And I'll tell you, I did go home after that doctor appointment scared out of mind, wondering what other disease I could have, wondering how we would pay for the medical expenses to find out what other disease I could have. I even had to question myself, asking myself is it possible for the human mind to manufacture this significant pain, could this type of intense pain really be psychological! I didn't sleep that night. The next day, I sent my son out to get the mail and there was a copy of some publication I get quarterly from the NMSS. On the frot cover there was a headline that read: MS, Nerve Pain Is Different, so naturally I had to read that article and sure enough there it was, my pain described to a T. After three years of suffering, I finally felt as if someone understood me. So, I faxed a copy of that article to the doctor who claimed that my pain is not attributed to MS. Is it really any wonder why she would submit negative info to the ALJ in my case.
After reading the decision of the ALJ, I went to the SS website and started to read and learn and there are actually specific guidelines describing the manner in which cases like mine are to be considered, none of which were followed. In my appeal, I'm arguing that I wasn't non-compliant in refusing to take any of the CRABs, but rather that I was already taking an MS specific medication. I'm not arguing that LDN is FDA approved for MS. I'm arguing that it is an FDA approved medication and that it is prescribed off-label in the treatment of MS. I need an article to print and include with my appeal that supports my claim. Any help would be greatly appreciated. For instance there was an article a few years back in which a state legislature discussed the significance of LDN. I can't remember the state, but I do know it was on the East Coast. Basically any article that will help them understand that LDN is not quackery, that it very well may be what is helping me to get out of bed and stay out of bed each day. And of course that it may help reduce further, disease progression. In the four years that I've been taking LDN I've only had one exacerbation. Please remember that this needs to be a printable article, preferably from a recognized, respected source.
Every morning I awaken torn between the desire to save the world and the inclination to savor it.
- E.B. White