By Mary Busch
Editor’s Note: Mary Busch—a patient in our neuropathy community—shares her on-going journey that started with a getting a diagnosis, a frustrating quest for effective therapies, and a ray of hope that came in the form of a clinical research study. We appreciate Mary’s contributions to moving the ball forward in neuropathy research, as well as her willingness to share her inspiring story!
Just ten years ago, I was a “regular mom”—working, taking care of my family and my home…and trying to squeeze in a few moments each day to stay in shape. Little did I know that an insidious neuropathy diagnosis was going to change my life forever.
After my husband Mike's company shut down in December 2003, he took up a job in Texas. We found ourselves relocating, leaving behind our family and friends and what we called home (Cincinnati, OH) for thirty-nine years. The first few months went by quickly: I was setting up a new home, making sure our kids adjusted, and looking for a new job…all of this was stressful—to say the least. It was during this time that I first noticed a "tingling" sensation in my fingers.
I’m sure you’ve felt it: the “tingling” when your hands get really cold or when you have your hands in one position for too long, you develop this "pins and needles" feeling. I didn’t really pay much attention to these symptoms because they were sporadic. But then it wouldn’t go away…and I began dropping things and I couldn’t explain it away (“Don’t mind me; I’m just a little clumsy today!”).
The "pins and needles" feeling was spreading to my toes and it was becoming more bothersome. So, I went to a primary care doctor for an evaluation. She didn’t seem all that concerned about the symptoms, but gave me a prescription anyway. For the first few days after I started this medication, I could not keep my eyes open. Even after consulting her about adjusting the dose, I just couldn’t shake the drowsiness. Since my doctor wasn’t too concerned, I stopped the medication and I ignored the symptoms. After all, I was a busy mom and life was calling--even through these seemingly benign and annoying symptoms.
In August 2004, I was eager to start my new job at Blanton Elementary School. The "pins and needles" feeling was still there, but I was functioning pretty much at a normal level. By November, however, I could no longer ignore the symptoms: the "pins and needles" had spread to my arms and legs, and it was accompanied by numbness and fatigue. This time I consulted a different primary care doctor who started testing me for simple things like vitamin deficiencies.
When I got back to Texas after our holiday season travel to Cincinnati, I realized that my symptoms were worse. I was staggering; I couldn’t lift my arms; and I was falling. It was the fall that had me landing on my face that made my doctor refer me to a neurologist.
My first thought--after researching my symptoms--was that I might have multiple sclerosis (MS). After many blood tests, EMGs, an MRI, and a spinal tap, I was diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy--an autoimmune form of neuropathy). I later found out I was lucky: for many in the neuropathy community, it takes years to get diagnosed and to have access to treatments. My neurologist, at the time, put me on high-dose steroids for the next year. Although my symptoms dramatically improved, the side effects (weight gain, swollen knee joints, hypertension…) were devastating. I was told my CIDP wouldn’t return after I completed the steroid treatment. My neurologist was right…I was symptom-free for about a year. But, then it all came back; this time, the CIDP affected every part of my body—not just my arms and legs. I had trouble swallowing, nerve pain, muscle twitching, and spasms. It also affected my voice, speech, and cognitive skills…the list of symptoms seemed endless. I knew I needed a second opinion. I sought out another neurologist, Dr. Anna Tseng, who reconfirmed the CIDP diagnosis. She started me on a loading dose of Intravenous immunoglobulin (IVIG) at an infusion center.
For the next six years, I went through many treatments. Intravenous immunoglobulin (IVIG) was the only treatment that seemed to stabilize my symptoms, but the side effects were awful. I had severe headaches, nausea, and vomiting. My infusions were slowed down to the lowest dose to help minimize the side effects. My life revolved around the four 8-hour-days a month being infused and the following week spent recovering from the side effects of IVIG treatment. I made several ER trips to treat the dehydration that resulted from extreme vomiting. I also developed aseptic meningitis. My school’s principal was wonderful through all of this, but I was taking more and more time off because of my health issues. I felt that with each CIDP relapse my baseline health was slowly deteriorating. It got to the point where I couldn't work anymore…this was one of the lowest points in my life because I loved my job.
I had trouble swallowing, nerve pain, muscle twitching, and spasms. It also affected my voice, speech, and cognitive skills...the list of symptoms seemed endless.
In 2010, we found ourselves relocating to Florida. I started working with Dr. Lara Katzin at the University of South Florida to manage my neuropathy. There was an instant connection…we worked patiently together to tweak my IVIG treatments over the next few months, but I continued to struggle with the side effects.
While on a family trip to Bryce Canyon in 2011, I felt well enough to do some hiking. But I paid for it after getting back home. I was tired and weak…I thought a few days of rest would help me recover. But by the end of the week, I couldn’t walk; I couldn’t get out of bed; I couldn’t shower or even go to the bathroom on my own. I felt completely distraught and humiliated that I was unable to care for myself or my family. I had to call my parents to come and help me with the basics while my husband was at work. I spent the next six months in and out of a wheelchair. I had a lot of time in that wheelchair to think about my uncertain future. Because I wasn’t tolerating standard therapies, I was ready to give up. It was at that point, I began researching other options.
I recently learned about The Neuropathy Association--this find probably saved my life. I joined the Association’s local support group (in Tampa, Florida) to help myself and learn from others who were living with neuropathy. I also learned about clinical research trials through the Association’s website...this is how I found Dr. Richard Burt (head of the Hematopoietic Stem Cell Transplantation in CIDP research trial at Northwestern University)--my miracle worker.
I spent a lot of time researching transplantations and all the possible complications from the procedure. I spent months on Stem Cell-Facebook pages reading about other patients’ experiences. Then in April 2012, I met Wendy Nash--a fellow Floridian--who was participating in the clinical research study that I was considering. Wendy shared her journey with me and invited me to see first-hand what she was going through.
After talking with Wendy in April 2012, I applied for the clinical research study. In June 2012, I went for an initial 3-day evaluation with Dr. Burt to reconfirm my diagnosis and to confirm I met the clinical study criteria. I was accepted into the clinical research study—and, for the first time, I had hope--hope that I could beat neuropathy.
In September 2012, I started the long transplant process at Northwestern Memorial Hospital in Chicago. The first part is pre-transplant testing (cardiac, pulmonary, chest x-ray, EKG, labs, etc.). It was an exhaustive list, but Dr. Burt and his transplant team were very thorough. They wanted to make sure my body could handle the stress of the transplant procedure. During my testing, they found a large cyst on my ovary. So, even before I began, I had to have the cyst (and my ovaries) removed. After a few weeks of rest, I went back to Chicago for the stem cell transplant.
I was scared even though I had done my research, but I knew I was in good hands. I was admitted for an initial mobilization chemo—to stimulate the bone marrow to start producing stem cells. I was released from the hospital the next day and soon began filgrastrim shots to further stimulate my bone marrow to rapidly produce stem cells. The goal was to make enough stem cells to spill out of my bone marrow and into my circulating blood for harvesting. Approximately 10 days later, my stem cells were harvested through a catheter in my neck by a procedure called apheresis (a process that spins blood and separates the stem cells from all the other parts of the blood).
Now, I was ready for the main part of the stem cell transplant. Again, I was admitted to Northwestern Memorial Hospital in Chicago where I would stay for the remainder of the transplant. By this time, I was already losing my hair; so I shaved my head completely ... I thought it would upset me, but I was so focused on the next part of the chemo that it didn’t faze me at all. The next seven days were filled with chemo treatments. The chemo gave me headaches and made me nauseous, but the staff was really great about addressing these side effects.
Finally, the big day arrived: November 21st, 2012! My white blood counts were down to zero (Day 0--in the transplant world) and I would be getting my stem cells back. It was my “New Birthday!” My parents (my caregivers throughout my Chicago stay) and I had a little ceremony celebrating the occasion. I would like to tell you it was all uphill from there, but it wasn't: I developed a fever. Dr. Burt and his team were very proactive. They started me on antibiotics right away and took blood cultures. It turned out I didn’t have any infection. Some people just develop post-transplant fevers. I was still nauseous and I didn’t have an appetite to eat. Now, it was just a matter of waiting for my stem cells to engraft (or repopulate) my body with healthy cells. That happened 9 days later and I was able to go home. It was a grueling time, but I look back at it now and it really went by quickly. I've already had six months of my life back for that period of misery…I would do it again in a heartbeat!
The main reason I considered the clinical research study was to give myself a fighting chance…plus, it feels good to know I’m also contributing to research and I’m helping others along the way. Today, I still have pain and my nerves haven’t completely healed yet. My nerves may take years to heal, but I feel so much better. The constant fatigue is gone and I am walking two to three miles (yes miles!) several times a week.
Not everybody is accepted into a clinical research study and some health insurances will not cover it because the treatments are experimental. For me, participating in a clinical research study was the beginning of my future—one I could look forward to with optimism. Instead of planning for treatments every month, I am now planning vacations with my family. Most stem cell patients are treatment-free for years after the transplant. The doctors call it is a long-term remission, not a cure. Even if it is not forever, the hematopoietic stem cell transplant has bought me time ... time for research to catch up!
http://www.neuropathy.org/site/News2?page=NewsArticle&id=8488&news_iv_ctrl=1101
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