Here’s the highlights of experiencing a series of unexplained symptoms, getting a diagnosis of an incurable disease, trying to treat that disease naturally, suspecting a misdiagnosis, receiving another diagnosis, starting treatment, and finally starting to see improvements! And if that’s not a run on sentence, I don’t know what is…
Late December: I began getting a rash on both of my arms that wouldn’t go away.
January 14th: I noticed if I put my left ear to my left shoulder, my right leg tingled.
January 18th: I noticed my tongue felt strange, I thought it was due to eating out a ton while I was at a photography conference. Too much salt? Maybe???
January 22: I was on the way back from an all day road trip and the left side of my face started tingling. Thought I was having a migraine. I get migraines both with and without headaches that usually lasts a few hours.
January 24: Went in to the ER for the tingling in my face and tongue had not gone away. I was diagnosed me with an inflamed nerve in my face, given some meds and was sent home. They also didn’t know what the rash on my arm was. Eczema, psoriasis, and ring worm were a few thoughts.
January 28th: My feet and my hands were now tingling. I went back in to the ER. This time they an entire blood panel, spine x-rays, CT scan among other tests. In the end, I was given an antibiotic for a viral infection and was sent home. I was told to follow up with my family doctor in a few days. If it wasn’t viral infection, I was told the second guess would be MS.
January 31st: I followed up with my family doctor and was referred to a neurologist. My chest was now tingling in addition to my other symptoms.
February 3rd: I went back in to the family doctor and requested to be tested for Lyme due to the unexplained rash still on my arm. It came back negative.
February 4th: Had my appointment with the neurologist. Was told that my symptoms were most likely due to a chemical imbalance in the brain that anti-depressants may be able to correct. This is the nice way of being told, “it’s all in your head.”
February 16th: Was sent to my first MRI of the brain. The MRI came back fine. The only thing that showed up on it was two small spots possibly indicating premature hardening of the arteries. The neurologist wasn’t concerned about this at all.
March 10th: On the follow up appointment after the MRI, I mentioned that now if I put my chin to my chest, I get tingling all the way down my spine (apparently called L’hermitte’s Sign). I was then sent for an additional MRI of the T spine. This MRI showed active lesions on my spinal cord.
March 14th: I started having serious balance issues and was having difficulty walking. I could walk, but only if I was holding on to something. In general, it looked like I was drunk constantly. I went back for my neurologist followup appointment early and was admitted to the hospital from there.
March 14-18th I was admitted to the hospital for 3 days of high dose steroids (250mg of methylPrednisolone every 6 hours). During this time I had a lumbar puncture done and another MRI. Was given Lamisil for the spots on my arms, they went away after a few days. Not sure if it was due to the Lamisil or steroids.
March 24: Started balance physical therapy once a week.
March 28th: I received the LP results and was diagnosed with relapsing remitting MS. The doctor admitted that he wasn’t sure if I in fact had relapsing remitting MS or another form of MS (due to the fact that I have only had one attack). In order to receive MS therapy drugs, you have to have a RRMS diagnosis.
At this point I notice several of my symptoms going away due to the steroid treatment.
April 4th: I began taking Rebif, or interferon beta 1a. These are injections taken 3 times a week.
April 5th: The physical therapist noticed my heart rate was going from 70-120 within 5 minutes sitting in a chair. I was then referred to a cardiologist.
April 26th: I had a stress test done at the cardiologists office. They did an ultrasound of my heart, an EKG, injected me with nuclear material while I walked on a treadmill and took photos of my heart. All in all, everything came back fine.
Mid May: The spots on my arm came back again.
May 26th: Started the blog.
July 5th: I began (and stuck with) a 30 day strict detox protocol of green smoothies and bone broth and went off of all medication, including MS injections. More on that here.
August 5th: Began eating an organic, whole foods diet with lots of dark leafy greens in efforts to heal my body. More on that here.
August-October: I continued to maintain a healthy, nutrient dense diet. I noticed that I was experiencing less fatigue, little to no headaches and other general health improvements. However, my main ‘MS’ symptoms were still continuing to progress. Vision issues, balance issues, muscle and coordination issues among others.
September 9th: If efforts to see if I had elevated heavy metal levels in my body, I had an Meridian Stress Test performed, It came back saying that I had Lyme Disease, along with other various issues. I didn’t place a whole lot of value in this at first. More on that here.
October 3rd: Had blood drawn for an iGeneX Lyme test, just to see.
Late October: Could no longer walk without assistance and was falling an average of 2-3 times per week.
Early November: Finally received my Lyme test results. I was told over the phone by the family doctor that the labs were normal. I later found out that they were positive according to iGeneX. More on that here.
Early November: Started to notice that I was walking slightly better and began working out with a personal trainer. Was my diet finally starting to pay off?
November 23rd: I had my first appointment with my LLMD. More on that here.
November 28th: I started the Cowden Protocol, a herbal Lyme treatment.
December 25th: I was able to walk on my own, without assistance! Talk about a great Christmas present! More on that here.
January 11th: I had another MRI done. Long story short, my “MS disease” had progressed and there were more lesions on my brain. The LLMD says it can take quite awhile for white matter to disappear. More on that here.
February 10th: Facebook status – I just skipped down the hallway!
March 1st: Facebook status – Jogged down the street a little.