On the weekend of July 4th, 2014, while on a camping trip on Fire Island, I woke up one day and my right foot was numb, I worried it was a spider bite, but nothing was visible on my foot. It dissipated a bit during the day but the next morning I awoke and both feet were numb. I realized then that something unusual was going on. I was frightened and confused. I went to see my primary care physician, Dr. Peter Halper in the week following and he referred me to a neurologist (Dr. Scelsa at Beth Israel) as well as a rheumatologist (Dr. Paula Rackoff – still my Rheumatologist). ,,
I saw the neurologist in August 2014 and he performed an EMG, while noting minor carpal tunnel, he stated he did not see “anything neurological” to explain my symptoms. In the midst of all this, the numbness in my feet was now also in both of my hands. In addition, the numbness that was tolerable was now joined by an excruciating burning sensation in all extremities. While the burning would subside at times, the numbness was always there.
I was referred to yet another neurologist who, using the test results of Dr. Scelsa, also determined during a very short visit there was nothing neurological going on so he could offer no solution. He suggested perhaps I should see a psychiatrist. Needless to say, I was defeated, disheartened, and felt helpless.
On November 19, 2014, I returned to my Rheumatologist in tears. She had been treating me for some localized osteoarthritis and had never seen this side of me. I was always upbeat and willing to fight. She had been urging me to see an NYU Neurologist, for some time, but he had no appointments available until six months out. I have always been stoic and “walked through the pain” over the years. I worked at my full-time job throughout all this time and was my own caretaker. At this time Dr. Rackoff saw a crumpled and defeated version of myself. I told her that if this was my life, I really did not want it. She immediately picked up the phone. I saw my new neurologist, Dr. Sander, 2 days later.
After the most comprehensive medical history ever taken by a doctor in my life, Dr. Sander performed an EMG on me himself. All other EMGs had been done by technicians and then READ by doctors. Within 3 hours of meeting him, I was diagnosed by Dr. Sander as having CIDP. He was my Neurologist until he left NYU for a job in the private sector in 2021.
I began IvIG immunoglobulin treatment at home in late January/early February of 2015 after navigating some horrendous and almost insurmountable insurance hurdles. My stoicism returned and I have been receiving this treatment every 2 weeks since then. I have been asymptomatic and the strength in my entire body has improved over time. I mediate my pain using low doses of Gabapentin and Cymbalta. I still have some residual nerve damage in my hands and feet, but I am a functioning human being on most days
Navigating the medical care system (finding the right doctor, being seen in a timely manner, etc.) and the health insurance system (learning about justifying one treatment over another, justifying treatment at all, etc.) all while suffering with excruciating pain (or worse being intubated in an ICU with no ability to communicate or walk) seem like insurmountable challenges. I was lucky enough to be born a fighter.
Few people understand the linkage between GBS and CIDP. Put simply CIDP is the CHRONIC form of GBS. Patients with GBS (which is ACUTE) usually have a quick onset and, dependent on how quickly a diagnosis is made, can fully recover. People diagnosed with CIDP almost never “fully recover” but can go into REMISSION.
Both diseases require knowledgeable medical personnel to be able to recognize and treat symptoms quickly. As the NYC liaison and Coney Island Walk & Roll Chair for the GBS|CIDP Foundation, I have found some amazing consistencies in patients’ stories. With both diseases, a major hurdle has been navigating both the healthcare system and medical insurance. As a liaison and a CIDP patient, I can offer some guidance on both fronts. Given the fact that I have given this disease a fight, I can also bring some hope to some people by sharing my story.
In November of this year, my neurologist and I decided to PAUSE my IvIG to see if I am in remission. My only fear is if I am not, the insurance hurdle to get covered for IvIG might be a challenge. But I am up for it. I am a fighter. Hopefully, a fighter in remission!
If you are interested in connecting with DanaWynn, please contact the Foundation.