Hey everyone! As many of you recently know I've been having some health issues that haven't quite resolved in the way we had hoped. I thought it would be easier to have a website family and friends could go to for updates rather than hearing it through word of mouth or having to message people individually. Thank you for all of the support and kind words as we continue to figure out what the new normal is going to look like.
August 1st, 2019- I started to experience loss of movement of my feet. Marissa was home and had her sister come watch Eli so she could take me to the hospital. We drove to the Maple Grove hospital and waited a few hours. I already was seeing a neuroscience team at Regions as I was going to follow up appointments from fracturing 5 vertebrae in May. They determined I should continue care with this team and sent me to Regions hospital.
Long story short, it had nothing to do with my spine. In the meantime, the loss of movement or paralysis ascended up my legs. From there I was admitted into the neuro care unit. I was tested for many different types of infectious diseases and parasites. I had a lumbar puncture, several CT scans and MRI's. During these few days of tests, the paralysis continued to ascend at a rapid rate. I lost the ability to move up to my thighs and then had a cardiac respiratory attack. I was then put on a BIPAP machine and moved to the ICU.
At this point, the doctors determined Guillain-Barre syndrome was the diagnosis and started me on an IVIG treatment. By this point, the paralysis took over my arms, hands, bladder control and ability to breath on my own. After two rounds of IVIG treatment, I started to improve and was able to regain some movement and muscle control. PT and OT met with me daily to make sure I moved my legs and feet to prevent muscle atrophy. After a few more days I was able to stand with a walker and assistance.
I was given a total of 5 days of IVIG treatments and after 8 days in the hospital, I was moved to acute inpatient rehab where I learned to walk, shower, tie my shoes and become independent again. The team there was very surprised by how quickly I was able to start walking, showering and even doing stairs on my own. I was discharged in 4 days. I got to come home on August 13th late in the evening and it felt so good to sleep in my own bed and see my family.
August 17th, 2019- The family and I went to Marissa's parents' house to visit and grill for lunch. While outside grilling and watching Eli play in the sun, I started to not feel very well. It felt exactly like the first time and I shortly began to lose the movement of my feet. Marissa and I left Eli with her parents and drove to Regions hospital. We called ahead and let them know I was coming and potentially relapsed. By the time we got from Foley to Regions I had lost all ability to move my body basically from head to toe and had to be pulled out of the truck my a medical staff. I was immediately placed back on the BIPAP machine and felt the weakest I have ever felt in my life. After two or so hours on the BIPAP machine, I was feeling much less weak and was able to breathe without it. I was then admitted back to the neuro-ICU floor. The team ran more panels of tests including MRI's, another lumbar puncture and nerve conduction studies. After one night and no improvement, the doctor began administering more IVIG treatments. I received three more treatments and improved rapidly. After 4 days I was able to walk and perform most tasks independently, though I was still extremely weak. The doctors determined this rapid improvement was not characteristic of Guillain-Barre syndrome and sent me home anyway with no further answers.
September 9th, 2019- I had a follow-up appointment with my primary neurologist at the neuroscience building in St. Paul. From there this doctor told me it was not Guillain-Barre and these symptoms were indicative of early stages of MS or a very rare condition called Periodic Paralysis. She set further appointments for more testing.
September 13th, 2019- I had a cervical spine and head MRI in St. Paul to determine if I had lesions on my brain, which would confirm an MS diagnosis.
September 17th, 2019- I had another follow-up with my neurologist and she informed me there were no lesions and it was not MS. She continued to perform a long exercise muscle study with a nerve conduction study to determine if Periodic Paralysis was the answer. The tests confirmed a diagnosis of Periodic Paralysis. She informed me there are several types each with different triggers and treatments. She also said this is a genetic condition and it will affect me for the rest of my life. I also have a history of abnormal heart rhythms since my first hospital stay. She said this could be indicative of the subtype called Andersen-Tawil Syndrome.
September 18th, 2019- Neurologist put in an order for a 48 hour at home heart monitor. The data yielded that under high heart rates I have a long QT. This was not alarming, but still unusual and very typical with Andersen-Tawil Syndrome. Long QT can be something as minor as discomfort when exercising to as extreme as cardiac arrest. Since being discharged from the hospital the 2nd time, I have had close to a dozen major episodes of paralysis and/or heart issues that cause me extreme fatigue and discomfort. I have some sort of more minimal body paralysis almost every day. I am trying to take note of what I am eating, drinking, etc to see if there is any correlation. My neurologist said I am likely to have more episodes/attacks when resting after activity or when I am exposed to hot/cold temperatures. She also noted that eating more carbohydrates may minimize attacks, while potassium will make them worse. I have been watching my potassium intake very carefully, but it is difficult to increase any carb intake as many of you know I am a type 1-diabetic. Also to note, this doesn't have any relation to my diabetes.
I am now on a 30-day cardiac event monitor to further investigate the long QT episodes or look for any signs of AFIB or Tachycardia.
Moving forward this will be a mixture of med management and trigger control with more emphasis on the triggers.
Here are some examples of things that I will either be limited or not allowed to do at all
Strenuous exercise or anything that elevates my heart rate or blood pressure
Eating high potassium food
Sitting in the cold or the heat(perfect for our Minnesota weather)
No adrenaline based activities as my body can have a hard time processing the adrenaline
No impact sports like 4 weeks, snowboarding, water skiing
No or very limited drinking of alcohol
If I don't eat enough or eat too much in one sitting it can trigger an episode or attack
Plans moving forward
I have PT appointments every week to work on getting my strength and coordination back
I see my neurologist frequently as we figure out my triggers and the right medications
I still am following up with both endocrinology and cardiology to figure out other related issues and symptoms due to the PP
I still deal with paralysis on a daily basis. Sometimes it's just my hands. Sometimes it's just my feet. Other times it's my face making me unable to smile or raise my eyebrows. It can even be all of them depending on the day.
Interesting Links
http://hkpp.org/what-is-periodic-paralysishttps://en.wikipedia.org/wiki/Periodic_paralysishttps://en.wikipedia.org/wiki/Andersen%E2%80%93Tawil_syndrome
