MDA Clinic appointment (8/25)

We saw the doctor at the MDA clinic yesterday and she was on board with trying to figure out a definitive diagnosis! She wants us to come to her office in Lansing for some specialized nerve testing. I'm glad we are moving forward with this, but not super excited about the tests because she described it as electrical shocks through a needle in my arm for 45 minutes... but hopefully it will help us to get a diagnosis and figure out what is causing these issues! We don't have the dates for that testing yet, but I'll update when we do. She also said I should continue my supplements during this time and that they should not affect the test results. (thank goodness!)

Thanks for all your thoughts, prayers and support!

Anni :)

Upcoming appointment - MDA Clinic

Hi all!

Just wanted to remind you all of my upcoming appointment at the Muscular Dystrophy Clinic tomorrow afternoon (8/25). We will be seeing a different doctor and will hopefully schedule further testing to get a definite diagnosis. I have felt amazing throughout the past few months with only a few days where I have had problems. I will post updates as soon as I know anything! Thanks for keeping me in your thoughts and prayers!

Anni

Good news!!

Hi all! I'm writing today to let you all know that I (Anni) am feeling so much better!!!! :)

The doctors have made a probable diagnosis of a metabolic myopathy (not sure which type) and will be doing further tests to confirm at the end of August!

I started feeling better about the second to third week of May (after treatment with supplements) and have not had significant problems since then, so the doctors are very hopeful that I will be back to my normal self with a simple combination of vitamins each day!

Since mid-May, I have been able to do many of the things I never imagined I would be able to do again like rock climbing, biking, running, camping and participating in all the other sports and outdoorsy stuff I love. My doctor has also cleared me to begin working again!

Being ill has been very challenging, but I have learned so much about myself and where I need to change. I know I will be a better person because of all that has happened. I'll continue to keep you all posted as new information comes in!

Have a wonderful day!! :)

Anni

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

New recommendations from local neurologist

Our appointment with Dr. Lewis, a neuromuscular specialist from Wayne State University, was on April 22. Dr. Lewis basically recommended that we start over from scratch and repeat all testing with a local neurologist. We were kind of bummed, but he made some suggestions, which he passed on to local neurologist Dr. Landan.

Our appointment with Dr. Landan was on April 27. He suggested possible diagnoses including: metabolic myopathy, normokalemic periodic paralysis, and seronegative myasthenia gravis. Dr. Landan also mentioned that the thyroid medication Anni is taking could be causing this and will check into switching to a natural vs. synthetic supplement if the other diagnoses are ruled out. In order to rule out these illnesses, Dr. Landan will give doses of medications normally used to treat them. We will know we are in the correct area if the episodes no longer continue. It is a little bit backwards, but we think it is a lot better than what we have been doing. (nothing).

The first diagnosis on his list to rule out is a metabolic myopathy. Treatment is basically taking a few vitamin supplements each day. Anni will be starting the treatment as soon as we get the vitamins this week. If it works, a definitive diagnosis can be made with a muscle biopsy. We should know within a few weeks whether or not it is working and we will update again at that time. 

Thanks for all your love and support!

P.S. Jon will start working full time at the church starting May 1st!!! :)

Neuromuscular Specialist

The neuromuscular specialist appointment is scheduled for April 22 at 10:30am.

Hope everyone is enjoying the beautiful weather! 

Heading in the right direction?

Hello friends and family! Just wanted to update you all on the most recent appointments for Anni's health issues:

MDA Clinic follow up: Dr. Yan does not believe that this problem is caused by periodic paralysis because Anni's potassium levels remained within the normal limits during the episodes. Dr. Yan also told us that she is moving out of state and will no longer be following our care.

Wayne State University - Neurology: Even though Dr. Rajamani asked us a lot of questions and did a very thorough job, he was still stumped over what could be causing this. He wants us to come back to Detroit for an appointment with a neuromuscular specialist. We do not have a date for this appointment yet, but we will keep you posted.

We hope to have more information soon! Thank you for all your support!

Insurance Issues & Upcoming Appointments

Hello friends and family! Time for a little update as a few things have changed. 

1) Our U of M appointment scheduled for Wednesday (Jan 28th) has been cancelled due to insurance issues. They will not cover this appointment because U of M is not within our network. The insurance company said that we must go to Wayne State University before they will cover anything out of network. 

2) The soonest they are able to get us in at Wayne State University is March 3rd. The appointment is scheduled at 4:00pm and is in Detroit, MI.

3) We also have a follow up visit at the Muscular Dystrophy Clinic (Grand Rapids, MI) on February 24th. The doctor at the MDA clinic believes that these symptoms could be caused by a form of periodic paralysis. She has been working with us since November to try to diagnose or rule out this possibility.

4) Anni's long term disability claim is under investigation due to lack of diagnosis. They have requested further documentation, but have said that it is unlikely to be approved without a diagnosis.

5) We are trying to start a small vinyl sign business out of our home to make a little bit of extra income. If you or anyone you know may be interested, please see our website:

http://www.lakeshorevinylexpressions.com

We are trying to remain patient and persistent during this time of unknowns. Thank you all so much for your concerns, support and prayers during this time. We appreciate you all very much!

"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."  - Romans 8:28