Mom's 2nd round of Mayo appointments (November 18-19, 2013)

November 25, 2013
Email sent to family and friends

Hello everyone,

Yep.  That's exactly how I feel, especially after this last trip to Mayo.  

I never sent out an update regarding mom's first visit to Mayo, but you might remember the lengthy text I sent.  I will do a little recap.  Mom's very first appointment at Mayo was with a general internal medicine (GIM) doctor to determine her needs and to schedule tests, labs, imaging, appts, etc.  The GIM dr. was a very pleasant lady and seemed to grasp mom's condition and needs.  The goal was for the next two days to be spent getting as much info as possible gathered for the neurology appt.  For various reasons, not all of the tests could be scheduled within that time frame.  The neurologist evaluated her physically and mentally for a grueling two hours. It was one of the most thorough neuro exams I have ever seen and I've seen quite a few since May.  He also videoed part of her exam.  But at the end, he really couldn't tell us anything.  He said it was hard to tell because of the meds (which were all prescribed by neurologists to suppress the movements/myoclonus) and the possible side effects of those meds.  He wanted her to come off the meds and come back after a few months for additional testing.  To completely get off the meds, it takes time.  Mom is on three very strong meds and withdrawal symptoms were imminent.  She would have to slowly come off of each med one med at a time.  This in all likelihood would take her approximately 6-8 weeks.  The neuro also recommended water therapy for her.
We left our first Mayo visit a little disappointed that we didn't get all the testing done and that we didn't know much more than when we came, but we had a plan.  

Two days after we got back, she had a follow up with her Tusc. neuro.  After relaying the Mayo neuro recommendations to him, he referred her for the water therapy.  So while she was coming off meds and having withdrawal symptoms, we got her started with some physical therapy and water therapy.  We were going twice a week up until we left for the 2nd Mayo trip.  Might not have been the best of timing,  but looking back I think it helped her work through some of the withdrawal symptoms.  Also, shortly after we returned from Mayo, I was able to schedule the rest of the Mayo testing and a follow up visit with the GIM dr. for Nov. 18-19.  So in about 3 1/2 weeks we would be returning to Mayo.

During the 3 1/2 week wait to get back to Mayo, Mom was able to completely get off one med and had significantly decreased another.  Every few days she would experience withdrawal and it would seem like a set back, but she would work through it.  

Fast forward to November 14, a few days before we were to leave for Mayo.  I called Mayo to see if the MRI's had been approved and rescheduled.  They were supposed to let me know, but I had not heard from them.  It was then that I found out that her GIM dr. she was to be following up with on Nov. 19, was no longer at Mayo!  Yep!  The first we had heard about this.  I asked if she would be seeing another dr.  They had to look into it and call me back!  So they did call me back and they put her in with another dr.  This should have been omen #1.  The MRI’s not getting approved was omen #2.  We left for Mayo on Sunday, the 17.  Mom had a stomach bug on the way---omen #3.  I was driving and praying I wouldn’t get it, too. I had no idea how I was going to take care of her and myself, but thank goodness, I didn’t get it.   We got to Jacksonville Sunday night, got a good night’s rest, and arrived at Mayo by 12:15 for her scheduled spinal tap.  She was prepped and ready when the radiologist came out to tell me he had talked with the neurologist and that the neurologist had deemed the spinal tap “not medically necessary”.  In other words, she would not be having the spinal tap done!  I was speechless.  Well, not really.  I had a WHOLE LOT to say!  The neurologist wasn’t the one who ordered the spinal tap in the beginning, so I could not understand why he had control over it, nor did I understand how mom could have even been scheduled for it if this was the case!  After much discussion, the radiologist said he would be happy to do the spinal tap if her GIM dr, (the dr. who mom would be seeing for the first time the next day) would approve it.  Not getting the spinal tap was a real let down because we felt like it was the one test no one had done yet although several doctors had talked of it.   And did I mention she had the bloodwork done for the spinal tap??  Yep, stuck for nothing.

The next day we had to be at the hospital at 7:30 for two tests.  The registration desk was backed up and made us late to our appt.  Because walking gives her out, Mom was drenched with sweat and so fatigued I had to exchange her walker for a wheelchair.  Since we were late to the test (we weren’t the only ones), the tech was rude and said she could only do a partial test.  I got upset and tried to explain, but there wasn’t a thing I could do.   Mom said the tech continued to be rude throughout the appt so I was sure to file a complaint later that day.  I had been pushed to my limit.  They took mom from her first test straight to her second test so I didn’t see her again for about three hours.  When she was done, she was so worn out I took her the hotel to rest before her appt with the new GIM dr.  Finally, we saw the new GIM dr. who seemed very nice, but we really wished it could have been the original GIM dr.  Basically, the tests that had been completed earlier in the day were normal and the new GIM would not “go over a specialist’s head” and re-order the spinal tap.  So what she was saying was that they would have done the spinal tap had it been scheduled before the neurologist saw mom.  But they let mom get a $1200 test done that was NOT covered by insurance and that was NOT recommended by the specialist (neurologist).   As you can imagine, by this point, mom and I were completely and utterly exhausted and beside ourselves.  

What's happening now:  Mom is completely off the second med.  One more med to go!  We don't go back to Mayo until Jan 27-28.  Mom will complete more testing at that time.  She will continue to have regular appointments with her Tusc neuro from now until then.  Other than that, we wait.  Just wait.  It's so hard to believe that in one more week it will be 7 months since this all started.  That's very depressing to me.  I'm trying to stay positive and not let it consume me, but it does.  Last week was a horrible week for me.  This week I'm trying to refocus myself on the things I can control.  Especially this week, I'm reminding myself of all the things I can be thankful for and all the blessings in my life.  

I know some of you have asked me to let you know if there's anything I need.  Here's what I need:  for my mom to stay motivated and know that people are praying for her and thinking of her.  If you can, please send a little note or card to her.  It can be anything.  A post-it note in an envelope or a cheap card.  Just something.  

Dianne Knight

1297 Hwy 13 S

Berry, AL 35546

If you've made it this far, thank you for reading this very long update and email about my mother and our journey over the past month.  

We still need your prayers.  For answers.  For motivation.  For positive thoughts.  For comfort while coming off the meds.  For patience.  For faith.

Love to you all,

Kim

11/26/2013
addition to email above

I have one more thing:  I wanted some clarification on a test and had left a message for the GIM dr.  I hadn't heard back so I sent an email.  I received a response this morning.  The response from the dr was that "her time did not allow for discussing test results over the phone" and that she would be "happy to see us again to discuss the results".  And we are, umm, only 500 miles away.