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Cullman Appointment Report

Don’t ask me why I put flowers as our image for the blog post.  I guess because I didn’t take any pictures yesterday.  I must have been sidetracked to not get pictures for our blog post.  So, you get to enjoy these beautiful flowers.  They have been some of my favorites!

Zine held up well on our trip to Cullman yesterday.  Our wait time was probably about 2 hours.  While we waited, I read a devotional to Zine and we were able to discuss at great length.  That’s probably the first good discussion he and I have had in several weeks. The results of our appointment aren’t life shattering, but neither are they incredibly wonderful either.

Dr. L

We love Dr. L.  He has a fantastic bedside manner.  He is most definitely waiting 2 hours to see!  When he walks in our room we are his only patient and we have his full attention.  I personally love that about a doctor.  I don’t like waiting but I like having his full attention.

Zine has been struggling a lot with a side effect of MS, and we were anxious to share that with Dr. L and get insight.  After talking about that concern with him, it seems we are doing the best out there for the problem.  So this symptom of MS, we just have to learn to deal with for now.  It is definitely not something we would like to learn to live with.  We would love for there to be a magic pill to take and make it better!  However, we are already taking that!!  So we continue to live life.  Despite Zine’s desire to quit, he gets to keep plugging along!

New Drug Approved for MS not the best match for us at this time.

We were able to discuss the brand new medicine that been approved.  Dr. L tells us it is number 2 in the line of drugs for MS.  We are getting number 1.  He explained it like this, Tsabryi infusions deal with T cells.  This new drug deals with B cells.  Lemtrada deals with T and B cells.  That explanation I could kind of understand!!  Dr. L sees no reason for us to change our approach right now.  He believes the disease has been slowed which is what the Lemtrada was aiming to do.

He went on to share there were clinical trials opening up about remylinating.  These drugs are looking at repairing damage that has been caused.  The issue is remylinating doesn’t fix dead neurons and Zine has many, many dead neurons.  So how much benefit these drugs would be for us is not hopeful.   Nor is there a guarantee that Zine would qualify based on his disability level at this point.  It sounded like based on information we heard that research was winding up on drugs to treat MS as there are multiple drugs now that does that and the research focus was now moving to be centered on repairing damage.

Zine’s next big appointment is Monday with the oncologist/hematologist.   Between now and then it will be home health visits I’m sure!

We are also prepping for the big graduation weekend for Conner!  Transition season to say the least.



Wife of 20+ years. Mom to 3 children. Love sharing my life with weary hearts so that we can know the One who is Good, who is in Control, and Whose strength is made perfect in our weaknesses.

This Post Has 2 Comments

  1. Beth

    When Dr L explained to me why the trigeminal neuropathy did not show on the MRI, he said think of the trigaminal nerve as a restored 1964 Mustang without a motor. It looks great on the outside, but it doesn’t work right.

    1. kksmith8694

      Yep! Sometimes things die! And they are not to be revived! Unfortunately!

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