The story of Barbara
My journey with MPA Vasculitis began with two months of flu like symptoms. I was confused given it was summer, and I’d had an annual flu shot earlier that year. I ran a low-grade fever for two months while other symptoms seemed to come and go on a daily/weekly basis. I began experiencing shoulder pain followed with a horrific cough-worse than when I had pneumonia that put me into ICU for two weeks. My next symptoms were arthritis-like joint pain and not being able to focus my eyes. I experienced increased swelling combined with minimal feeling in my feet. Two trips to the clinic later, the doctors had done their best to help me but, unfortunately, only focused on the most recent symptom(s). They gave no thought to the cumulative malaise I was experiencing.
The third month saw me losing many basic abilities. My feet continued to deteriorate and felt like overblown balloons with ten times increase in nerve pain. Where I’d previously had some sensation in them, I now had none. I began to realize that my large toes were turning into hammertoes. Peripheral Neuropathy, which I’d dealt with for years, had already been the root of my six middle toes turning into hammertoes and subsequent surgery. This new scenario was really upsetting. Days later I experienced sciatic nerve pain and then vertigo, postnasal drip, and numbness in my hands. Initially it was only a few fingers on one hand, but it progressed to the point where all ten were negatively affected. Both hands also become extremely weak. My worst day, however, was the day I woke up unable to hear out of one ear. I quickly discovered, too, that I was no longer able to stand and keep my balance. My ankles had swollen, and I discovered drop foot in both feet and one of my arms had gone numb.
Four months into this journey I was still feeling ill and to started to be frightened. I had no idea what was happening nor any idea of what would come/go next. I went to the ER on one of my bad days where the ER doctor advised me to make an appointment with my neurologist. I hadn’t seen my specialist for a couple of years so was told that I needed to get a new referral from my family physician. I was only able to see the on-call doctor when I went back to the clinic-the third time in four months. Another delay, and I finally received a phone call advising me that I had a neurology appointment 4 ½ months later. The appointment I’d made to see my own GP arrived. I let him know how dissatisfied I was having to wait 6 ½ weeks to see him and the 4 ½ month wait to see the neurologist (I’d seen him numerous times before). Going over my five months of symptoms. I pointed out that I now required a walker to get around. I’d been seeing this doctor for more than twenty years and had, fortunately, not ever experienced serious health issues. My hope was that he would really hear me. I’m grateful that he did, in fact, really listen. Realizing my need to see a neurologist had become an emergency and my appointment was still going to be a three month wait, he spent the next day calling specialists to find someone who could see me quickly. Later that same day I received information regarding an appointment set up for a few days later. This as the beginning of three months of specialist’s appointments, lab tests and nerve conduction studies.
I ended up seeing three neurologists, having two nerve conduction studies, (a bonus-falling and fracturing my foot), saw a surgeon (re a nerve biopsy), saw a rheumatologist and had multiple trips to the lab and x-ray within the following few weeks. Trying to regain some sense of normality, I began Vestibular Rehabilitation and also discovered a need for orthotic-foot braces. These were ordered immediately. My nerve biopsy was done the next month followed by three consecutive days of Prednisone infusions. I was then given appointments for follow ups with the specialists taking my case. Continuing to still try to find normality, I ordered what became much needed hearing aids. The month ended with my diagnosis of MPA Vasculitis.
Having no history of significant health problems, I was taken aback to learn that this disease typically shows up in 10-20 people out of a million. There is currently no cure for it, and the standard treatment plan/goal is to put it into remission. Steroids and low dose chemotherapy drugs are the primary medications used over a 6-12+ month period of time-the estimate to accomplish this. I’m told that a lifelong maintenance program is then implemented unless there is a flare. Should this happen, it will be necessary to return to the high dose of steroids and the chemotherapy medications. Approximately 50% of patients experience a flare-up within two years of their original treatment. My fingers continue to be crossed.
One of my biggest struggles has been the loss of being able to drive. I had no idea how restricting this is. Being fiercely independent, and now having to rely on others to get places is hard and disheartening. I’ve developed a new appreciation for the regular struggles the hearing-impaired experience. My disabilities have left me mourning the full use of my hands. I’ve had hobbies for years which I’m now unable to continue. I had once been able to easily type out any letter, paper, etc., haul around a heavy bag/box, etc. which I can no longer do. Realizing that I’ll be dealing with this for years to come, I’ve set a goal to discover a doable activity that is both useful and helps me both look and move forward.
None of us gets to choose our lot in life, so I’ve been trying to find something-anything positive to focus on besides the Vasculitis itself. I’ve decided that I am grateful that I did not have to deal with this until after my children were fully independent with families of their own and doing well. As time continues to fly by, I’ll continue to get weekly bloodwork done and attend a multitude of appointments, all the while being ever mindful of possible kidney and/or lung problems.
Truthfully, I’d not wish MPA Vasculitis on anyone…