An Oldie but Goodie ~
Are you fortunate enough to have a physician who takes the time to listen to you? Help you manage the unpredictability of your respective disease? When you do, it definitely makes each day a little brighter knowing you’re in good hands.
I was more than happy to travel to see the experts at John Hopkins MS Medical Center, Baltimore, Maryland, to treat my MS. After all, they are among the Top 10 MS Centers in the states, renowned for providing cutting-edge treatments and clinical trials. I was right where I needed to be, or so I thought.
There, clinical trials were plentiful. I simply needed to qualify, agree to participate, and sign their informed consent. That’s where the struggle began. As discussed in a previous post, Clinical Trials…No Thank You!, I elected not to participate in their clinical trial for good reasons. The benefits did not outweigh the risks for me.
It wasn’t long after my decision that my white blood cell count and liver enzymes were significantly abnormal. The doctor changed my DMT to Copaxone with the hope that my labs would return to normal range. Copaxone is man-made and doesn’t alter white blood cell count or liver enzymes. Fortunately, after several months, my numbers were normal again. Praises for sure!
During this waiting time, I became concerned as my doctor’s office did not return my phone calls or emails to MyChart. I desperately was looking for clear direction: What should I do regarding my abnormal labs? Was this something I should worry about? For 15 years, I never had these issues. Finally, she responded, “Follow up with your family doctor.” “Your on Copaxone.” “It doesn’t effect you WBCs or liver levels, therefore, we can’t handle this.” My response, “Are you kidding me?” “You’re the expert not my family doctor.” Talk about feeling helpless. Was this in response to my “No thank you” for participating in their clinical trial?
Time to move on. For years, I was previously treated by a local MS Neurologist. We loved him! However, at our last appointment a few years back, he excitedly shared he took a position at the University of Virginia. His role would be Assistant Professor and Research MS Neurologist. As the tears filled my eyes, selfishly, I was sad he was leaving. But, I knew he would continue to impact and help patients in the MS Community. For that, we were happy.
So guess who we went to see? That’s right, my previous neurologist, Dr. David Jones. This time, we headed down the highway to Virginia and enjoyed the beautiful Blue Ridge Mountains along the way. At our appointment, smiles abound as we enjoyed our conversations with Dr. Jones. We picked u[ right where we left off!
We talked about my current status and obvious progression. He shared that there were several drugs in development for progressing forms of MS. That was exciting to hear. I also asked him if he heard of a Clinical Trial in France, MD 1003 – high dose (300 mg)Biotin? He did. It’s believed that high dose Biotin would help regrow damaged myelin. Improvement in function was noted in France as early as three to six months.
High dose (300 mg) Biotin is not approved by the FDA. Currently, there are no clinical trials being planned here in the states. However, with a written script from your neurologist, this supplement could be filled by a compounding pharmacist. We decided to make the investment to see if this would stop my progression and begin repair of my myelin. I was hopeful that perhaps this compound would do the trick. However, I remain cautiously optimistic. I don’t want to be disappointed should it not work.
Despite the long trip to see Dr. Jones, hubby and I left his office feeling a sense of peace and comfort knowing he had our best interest at heart. That means the world to us! How about you, are you happy with your physician? Are you able to have good dialogue to determine what is or is not best for you? Or are you like me, time to move on?
“Count Your Blessings”