A Health Update: Autonomic Nerve Failure

Many of my friends are going to want an update after I’ve seen Dr. Guggenheim at OHSU after my brain/spine MRI and autonomic testing/tilt table test.  So, I am doing this by way of a blog entry to try to lessen my energy and time in keeping people updated. It means so much to me that I have so many friends and loved ones who care and who provide support and prayer on my behalf.  I will try to keep this short, but I’m not good at short writing.

I do not have POTS as I thought, but Dr. G says what I have is much, much worse. I have “autonomic nerve failure” due to Sjogren’s Syndrome damaging my nerves.  Long story short, I have a lot of dizziness, brain fog, fatigue, sickness, near fainting sometimes, etc., and it is usually worst in the morning.  Basically, due to nerve damage my brain and heart no longer automatically adjust or work properly.  This was the result of the autonomic testing. Dr. G did not have a copy of my brain/spine MRI (due to a mix up), so she could not speak to it much but she is going to get it and give me a written report.  But my other doctor told me I have a small brain tumor which is of little concern and just has to be watched annually, and I have a herniated disk in my thoracic spine which is also of little concern.  (But it was hard getting two more problems on my list, with the brain MRI showing no reason for my symptoms.)  The brain MRI showed no white matter, so no MS.  The next step is to see a neurologist, Dr. Stacey at OHSU, who is an expert in POTS and autonomic nerve failure.  If I don’t get help there, I may want to consider seeing an expert in this area at the Mayo Clinic in Scottsdale Arizona.

My other type of sick spells which are more allergic reaction like in nature are we believe due to MCAS (mast cell disease), and I am not going to bother trying to test for that as it is too expensive and complicated.  Dr. G agrees I probably have this too and understands my not wanting to pursue testing for it.  I will try to decrease high histamine foods from my diet in an effort to help this issue.

I also discussed my dental woes/dilemma with Dr. G. She could not advise me but sympathized with the difficulty of the decision to know when to stop throwing money, time and suffering at more dental work versus just having the teeth pulled because I will likely lose them eventually anyway due to Sjogren’s damage.  I have another infected tooth to either root canal or have extracted. This tooth is key supporting a three-point bridge. It is right next to the crown I need to do over the present gap in my teeth over the dental implant which has healed. I will be discussing this with my regular dentist on August 10.  I got the information I have from the periodontist who did the implant.

So, I got bad news but it is actually such good news for me because I feel validated that I am not crazy and I have been getting really quite sick over the last ten years or so.  Dr. G is the most caring, smart, knowledgeable doctor, especially for the area I need, that I’ve ever encountered.  She is a young doctor and much in demand already.  If you know anyone who needs help with dysautonomia (POTS etc.), what I have, mast cell disease, or chronic pain management, she is the one to see.  I cannot thank God enough for helping me get directed to her.  I found Dr. G via Facebook support groups for dysautonomia, etc.  Social media can have very positive and life changing impacts.

Spiritually, I am trusting God and growing in my faith because illness causes one to lean harder on God.  So, I’m even grateful, not for the suffering and illness, but for what God is teaching me from it.  I hope to blog more about trusting God through health trials separately.  Thanks for caring and if you’ve taken the time to read this.  How can I be praying for you?  How can I help you?  Do you know you can have peace with God and have no fear of death?  And you can find strength for life no matter how bad it gets?  Be in touch if I can be of assistance.