My Story

On December 11, 2012 I was diagnosed with Multiple Sclerosis (MS). Leading up to then, I experienced several physical and mental symptoms and various blood tests and MRIs.

It wasn’t until February 2013 that I requested all my blood tests and MRI results in paper to review at home. By reviewing the paperwork, I learned the Western Blot Lyme Panel taken in September 2012 (3 months prior to my MS diagnosis) came back to show 2 positive bands; 23 and 41. Although those bands are recognized by the CDC, those 2 bands did not meet the criteria for a positive CDC Lyme test result. That single piece of paper changed my mind, my direction, and my treatment route.


HOW IT ALL BEGAN


April 2012: After removing a small scab from my scalp, a perfectly round dime-sized bald spot remained. This spot was soft and appeared to be filled with liquid, like a blister on the palm of the hand. There was also a tiny black dot in the dead center. I scheduled an appointment at my PCP.

May 2012: At my PCP appointment, he ruled out any sort of insect or bug bite because there was no redness or signs of infection. No treatment was necessary at this point, so he wanted to see me back in a few weeks. At my next appointment he said is appeared larger and believes it is a scalp cyst. He suggested I see a dermatologist and gave me some antibiotics to prevent infection. The earliest dermatologist appointment would be 3 months away, so I scheduled an appointment with a local General Surgeon.

June 2012: The General Surgeon took one look and said it was NOT a cyst like my PCP thought. He gave me the option to let it be or cut it open. I chose to cut it open since I was still bald (for 3 months at this point) and it now has doubled in size. As he cut, clear liquid drained out and he pulled something out not of “human origin”, so nothing was sent to the lab for testing. Within two weeks, my hair started to grow back, at least around the scar tissue.

July 2012: I started to experience heaviness in my legs, like bags of concrete were tied to them. I also had sporadic blurred, phantom, and snowfall vision. These symptoms lasted for about a week and went away. There was also an electric charge down my right arm when bending my head down and a neck creak when I bent my head up. I know I hurt something in my neck while building a playhouse back in April, so I attributed this weird sensation to a pinched nerve.

August 2012: After celebrating my 30th by golfing and having some beer, the symptoms returned a little more revengeful. Although I only had a few beer during a 7 hour golf outing, I felt as though I was overly intoxicated and could barely stand. I made another appointment with my PCP to address what was happening.

September 2012: I saw the second doctor at the office, not the original one who reviewed my bald spot. So I explained the spot and my current symptoms to this doctor. The first question out of his mouth was “Have you ever had a Lyme test?”. Results came back a few days later where he told me I was “borderline”. I wasn’t sure what that meant, but I wanted another Lyme test.

09-26-12-IGG

09-26-12-IGM

October 2012: The heaviness in the legs went away, the sporadic vision issues still remained. A new symptom came about, a painful and sometimes numb patch on my stomach right below the rib cage. It almost felt like Shingles, but only lasted a few days. Went back to the PCP again and he said it might be a pinched nerve that runs along the area in question.

November 2012: Stomach numbness came back and my right arm started to experience some numb patches as well. These were not paralysis numb, but sensory numb. I could not feel water temperature on the patches during a shower. I went to the PCP again, and he test me for Lyme, again. Same results, minus 1 band. LabCorp tests are inaccurate to begin with, but any test will only produce results if your body is producing antigens/antibodies to fight the infection. Since this test was 8 months after my assumed infection date, it makes sense that I am 1 band shy at this point.

11-28-12-IGG

11-28-12-IGM

December 2012: On the 5th I sat in a hot tub for about 3 minutes, but it felt like hours. I had to get out because of abrupt blurred vision and dizziness. The next day at work I was sitting in a meeting and I felt something was off. I quickly began to go sensory numb from the chest down. It felt like a compression suite around my entire body, except from the shoulders up. I left work and went right to the PCP. He scheduled me for an MRI of the brain that night. Results came in next day and he told me I had “symptoms consistent with MS” and the MRI showed “numerous” lesions. He has scheduled me an appointment with an MS Neurologist for December 11th, 2012.

The My Updates section will continue on with my personal experience.

4 thoughts on “My Story

  1. I am so glad I saw you again. It has been a while since I could talk to someone who “gets it” about Lyme and is so versed on the subject. I am so glad you are on the road to recovery because you have a lot of people to teach and help about Lyme.

    Michelle Raber

  2. Hello There!!! First and for most.Thank you for sharing your story and so sorry you are going threw this…I certainly wouldn’t wish what we go threw on my worst enemy..My son’s girlfriend gave me the references you shared! I’m going to call the first Dr on your list and schedule a appt..Best wishes to you!!!!

  3. Thank you for sharing. I would love to connect and share your story with my network. My journey started in 1982 with a tick bite, rash, boat load of symptoms… and diagnosed with the flu, then onto viral pneumonia, Epstein Barr, mono x3, MS, “faker”, CFS, FMS, RA. Who knew anything about Lyme in California at that time… obviously, not my doctor. I am still in the battle. No positive Western Blot markers at all. But a Pharmasan Labs test shows many markers that are out of the ballpark. I am continueing to read through your information. A new doctor through Sutter Health who is supposed to treat chronic Lyme. BLifebyShawn@gmail.com #LymeLifeHOPE

  4. Gosh this story is SO familiar… i too have an MS diagnosis but actually I feel my trigger was having breast implants which leaked and then started my immune system going crazy and eating itself… there really are many more reasons to get Lyme (which MS is after all…) and its not just hereditary or bad luck, were poisoning ourselves in this life we lead… How are you now? hopefully making a full recovery… any tips?? whats the best treatment or change youve made to regain your health??

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s