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”

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4 Comments

  1. Susan Clark Denny

    Calling my Neuro re: Biotin TODAY! Thank you for sharing this information, GF, you are far more proactive than I!

    • They shared this study at the ECTRIMS meeting. Neuro shared they were very excited with their findings. Studies won’t be coming to states any time soon. Return of investment will not warrant the trials. 😦 Dr. Jones was the neuro I was teamed with for patient programs too! Great respect for him. Do you receive the MSFocus Mag? He has a nice write up there about advancements for progression! Hold on GF, help is a coming!!! ❤

  2. I had a good Doctor Cath he was very through and took the time to explain procedures but the waiting to see him was just too long, I waited 4 hours one day, mostly though it was about 2 hours, you couldn’t make an appointment it was all Bulk Billed. I go to another Doctor now, I’m just getting to know her but she does seem very caring and takes the time to listen and advises what’s needed and why.

    I feel very much for you Cath and give Thanks for your positive focus, may God continue to bless you greatly in your very difficult life journey and may you know the inner Joy of His presence 24/7.

    Isaiah 43:1-3 – Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the LORD, your God, the Holy One of Israel, your Saviour.”

    Jeremiah 29 :11-12 For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a Future and a Hope.

    Lamentations 3: 33 For God doth not afflict willingly nor grieve the children of men

    “Christ”ian Love Always – Anne.

    • Anne, thank you for your kind words of encouragement! You scripture quoted is valued and always appropriate. He continues to use you mightily! So happy your found a doctor that provides all your needs, it’s important as you fight the good fight too! Send hugs and blessings your way, Anne!

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