The story of Shari
It took us 14 years to get a correct diagnosis. I first had signs that something troublesome was going on in 2004. I was passed around from one specialist to another, and finally told I should see a psychiatrist. It is hard enough to have your body start to fail you, even just in subtle ways at first, but it is devastating when medical professionals discount your symptoms, or suggest you are faking for attention. Hopefully my story will encourage you to keep searching for answers, even though I almost gave up myself.
After being told to get mental health help, I stopped going to doctors for a couple years, even as symptoms got worse. In 2009, I was rear-ended, and although it added to my suffering, it ended up being a very good thing. The pain management doctor noticed my lack of reflexes and numbness and was immediately alarmed. I tried to reassure him, saying, “Oh that? It is all just in my head.” He wasn’t laughing.
I was sent to the top neurosurgeon in Chicago and testing revealed what I was told was a tumor in my abdomen. That appointment led to another whirlwind of tests and specialists, and ended with a surgery that removed a 7-inch portion of my femoral nerve, leaving my left leg mostly paralyzed. We were told it was a rare tumor called a neurofibroma. It was a tough blow, but I was mostly just glad they found the tumor, removed it and let me know it wasn’t cancer.
Sadly, as I started to move on with my “new normal” and adapt to my disability, the numbness I had experienced prior to the operation continued to get worse, even in my “good leg”. I immediately became concerned that the tumor had returned.
The same doctors who had just treated me started off concerned, and within a year they were just sort of scratching their heads but telling me everything will be okay. They suggested it may be just residual issues from the surgery, or some new thing going on, but it was not a tumor recurrence. They started treating the neuropathy as a separate issue than the tumor they removed. I started to feel like lightning had struck twice. With no real help or answers, I once again went about living my life the best I could, and ignoring the troubling symptoms.
By 2013, I could not ignore the weakness and loss of balance. I was numb in both legs, fatigued easily, and had some mild symptoms in my arms, as well as the chronic pain and disability from the surgery. I switched to another large Chicago hospital for a second option, and many more tests were ordered. He believed me that there was something going on. He found many abnormal test results, but he wasn’t sure what was going on. We tried some treatment that didn’t really help, and then I was referred to a CIDP specialist at the first Chicago hospital where they did the surgery. This doctor is a leader in his field of CIDP and he was not sure what I had, but assured me it was definitely NOT CIDP.
After a couple years passed, and no treatment seemed to help, I once again just stopped going to doctors. Things were getting mildly worse, but so slowly that it was easy to try to ignore. Life was difficult enough, and all the extra tests and medications made it harder.
In 2018, I was referred to Mayo Clinic, and while I don’t think everyone needs to go there to get an answer, I would encourage everyone to keep fighting to get some answers. They reviewed past tests, ordered the pathology from my “tumor” and ran new tests. Dr. Dyck, whose father was the first to identify and name CIDP, let me know that I did have a form of CIDP/CISP, even though it did present a little differently than it usually did. Sadly, the last bit of bad news was that the surgery that left me paralyzed was unnecessary. Their specialists saw the biopsy specimens and were able to confirm the CIDP diagnosis. Basically surgeons removed a swollen nerve, and not a nerve tumor. From 2009 to 2018 we had been under the assumption that I had a rare tumor, and then got a rare neurological issue that was unidentified.
While all of this has been hard to come to terms with, it was also a relief to know there was only one disease at work, not many different things as had been suggested, and I finally had a name for it! My encouragement to all of you is to keep looking for answers. I should have sought another opinion before the surgery, and not taken a few years off from seeking treatment. In all likelihood, I may have responded well to treatment earlier in the disease process, and the surgery damage is irreversible, adding another lay of difficulty to my life. We are thankful that God has been so good to us over the years, drawing our family closer, bringing good friends to share in our suffering, and providing me with a creative outlet. (I have started doing art and crafts to deal with chronic pain. Also, I blog about my health journey which helps process all the feelings)
Today, my husband and I look for ways to “adapt, improvise, and overcome” so we can keep enjoying some of the things I used to love. We have given up so many things, and so we look for creative ways to continue as many things as possible. Life is hard, especially when you are a patient with a rare disease, or a caregiver. Take time to enjoy life with your family and friends. Keep pushing for answers, but we do caution everyone to manage your expectations. Every time you get your hopes up for an answer , or a cure, and are let down, the disappointment is almost unbearable. We try to keep our expectations reasonable and extend a lot of grace to doctors who do care, but aren’t infallible and all-knowing, even though some act like they are.
As of right now, the doctors refer to my disease as “treatment resistant” because nothing has helped improve my symptoms. We continue to make yearly treks to Mayo Clinic. We try to stay positive about things, dealing with one day, one issue at a time and keep finding ways to cope….. together.