When Your Symptoms Don't Fit Under Any Disease
My Mighty journey has been going on for roughly 20 years as a chronic pain patient, but just over three years ago, at 33 years old, my life was changed forever.
I woke up one morning and the left side of my face was completely paralyzed, hurt, and it was so swollen, bright red and hot to the touch. I had had Bell’s palsy twice before, and I knew this was not Bell’s palsy. I called my primary care provider (PCP) and was told to go to the emergency room immediately. Once at the ER, they diagnosed me with Bell’s palsy and shingles of the facial nerve. They gave me a couple of prescriptions and discharged me — all in under five hours. But I still knew something was amiss.
Friends, family and my doctors (especially my doctors) kept telling me, “Oh, it’s just Bell’s palsy, and it will clear up!” “You’ve had this before, you know it will get better soon! Be patient, you’ll be just fine!” On several visits with different specialists, I was told, “You have a psychiatrist, right? You have nothing wrong with you — it’s all in your head.”
The pain, swelling, and symptoms continued to worsen with each passing day, and no one would take me seriously, except my primary care physician. After two and a half years, over two dozen “specialists,” over two dozen imaging studies, half a dozen hospitals, and too many labs to count, I was diagnosed with the first of my two rare disease diagnoses by my rheumatologist — I had something called Ramsay-Hunt syndrome.
I was relieved to have an answer of some kind, but it still didn’t explain the other symptoms I was continuing to have. I had enlarged, painful lymph nodes, lesions in my mouth, tongue and even one on my nose, bilateral facial paralysis, indescribable pain, fever, brain lesions had formed and multiplied, over 100 pounds of unintentional weight loss, memory loss, inability to form sentences or do simple math, abnormal facial swelling, falling, clumsiness, numbness and tingling, and so much more.
We knew there was something very wrong, but no one could figure out what was happening to me, nor did they seem to want to even get involved! I felt so alone and helpless. It was the worst feeling in the world — not knowing if I was going to be scolded and looked at by others for using a handicapped parking space, having to tell my young nieces and nephew that “Auntie’s smile was broken” and having people I considered my best friends call me a liar, saying that I was making this all up. Well, I was sick. Very sick actually… And I spent countless hours with my PCP, and alone, researching my symptoms, calling on my PCP’s old colleagues with him just to see what they thought of the presentation of my symptoms. We were literally grasping at straws for an answer and to get some sort of relief for me. Anything!
In the process, I was finally granted disability on my final appeal with an attorney, however, no one ever took the 30 seconds to tell me that once I would get Social Security Disability insurance (SSDI), I would lose my medical assistance, as well as, and most importantly, my health insurance and prescription coverage I so desperately needed. And then I learned that my home state, Maryland, had an additional six-month “waiting period” to the federal government’s 24-month waiting period before my SSDI would even kick in. I was and am broke and had still no solid answer as to what was wrong with me.
We were finally put in touch with another specialist at a hospital that I had already been to, to see another specialist in the same office, except this time, I was seeing the Head of Neurology. He diagnosed me that day with my second rare disease, this one much more rare apparently than we could ever imagine. I have something called Melkersson-Rosenthal syndrome (MRS), a granulomous and demylinating disease.
I still have not been able to find a treatment for MRS, as the only one they have found as a “treatment” is a medicine made specifically for those with irritable bowel syndrome or Crohn’s disease, which I do not have.
During the two-plus-year process of going to all of these different specialists, I truly did not “fit” under any one “umbrella” of disease diagnoses. This made things quite difficult, not just for me as the patient, but for my “team” of doctors that have stuck by me through this all. My two rare diseases have several “mimicking symptoms” of many other not-so-rare, but equally as awful, illnesses and diseases. It truly was the most frustrating feeling. I really felt like no one understood my frustration or that they didn’t care, or frankly didn’t have time to care, or that I was a burden. I would come home from these appointments and just sob alone in my home. I felt like I was constantly being passed from one “specialist” to the next, and all the while, I felt so alone. I hesitated to talk to family and friends for fear of upsetting them, or causing them to worry more than they already were, or worse, that they would abandon me, as many friends already had. It was a very difficult time, and I still have days when I let the frustrations of living with these rare diseases bring me down. People judged me in ways I never thought they would, and I really did find out who my real friends and family were — and that was painful, too. But, and it’s a big “but” — you are your best advocate!
My best advice to those that are in similar situations is to be your best advocate. You and only you know your body. You know your brain. And you know what your normal is — no one else does! If something doesn’t feel right, “smell right” or seem right, talk to your doctor. If you don’t have a good relationship with your PCP, it’s time to find a new one. Without a good PCP, one who is willing to stand with you at your worst times and your best, you will become overwhelmed. And quickly.
You need to empower yourself through your illness. Instead of having “Boo hoo Dawn” days, I decided to make my frustration and aggravation into something productive. I became a patient advocate for the US Pain Foundation. I could now meet other patients like myself, and I could help them! I could help them find their voice, and if they couldn’t speak, I could be their voice, and vice versa. They helped me, too! It seriously turned my crooked frown back to a crooked smile.
Remember to take deep breaths, be as patient with others as you can, and whatever you do, do not let anyone tell you that you can’t get through this. You can get through anything. But no one can do it for you. You have to be willing to love yourself enough to “fight the good fight” every single day. Once that change happens within you, you, too will feel mighty… No longer a worrier, but a warrior, and a mighty warrior at that!
The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.