- CASE FILE
I am a 33 year old Mom, Wife, and Medic. I have been fighting for answers to better my life for my family and my job for the last few years.
ABOUT THIS CASE FILE
Since I was a child in my I have experienced pain in my joints that could not be explained. Over the years, other symptoms have emerged, such as malar-type rash, redness of the joints, inflammation, chronic idiopathic hives, oral and nasal ulcers, GI ulcers, Raynaud's, and extreme fatigue. I have been to several doctors who find that I have a positive ANA, however, nothing else shows up positive for Lupus, which is what they all want to test me for. All of the doctors dismiss me without further help or investigation. I live daily with severe headaches, nausea, pain, swelling, inflammation of multiple joints throughout my body, abdominal pain, pain in my chest/lungs, and extreme fatigue. Life has became extremely difficult.
In January 2019, I began having worsening symptoms of those that I have been living with, and also new symptoms that include nocturnal idiopathic epilepsy, memory loss, loss of concentration, bilateral general weakness, eczema, allergic reactions to heat/cold and touches/light scratches, photosensitivity, and extreme dizziness. I have moments of being unbalanced and being unable to coordinate my body movements, as well as tremors. I have also noticed frequent bruising without obvious cause, that can be severe at times. I have forgotten how to spell words that I have known how to spell for years and my speech becomes stuttered at times, and I also forget or lose words. Some days I can not get out a complete sentence and it is frustrating! There are some days that I cannot get out of bed or leave my own home. My family is suffering. I am afraid that I will eventually have to stop working the job that I love and that will make my family suffer even more.
I have suffered multiple miscarriage in the past, as well as multiple pregnancy related complications and preterm births. My second child was born with a rash that lasted 6 months, however, only regular pediatric follow-ups only were suggested to me. No explanation was given as to why. I had to have a hysterectomy at 31 due to harsh, long-lasting menstrual cycles and endometriosis. The doctor thought that would "cure" my frequent debilitating abdominal pain, however, it did not. No endo has been observed since the hysterectomy.
I have seen multiple family physicians who tell me that I am working too hard or that I have ADHD. I have tried Adderall without any noticeable changes. I have seen 2 Rheumatologists that have been extremely dismissive and have stated that I am too young to have an autoimmune disorder and both blamed the Adderall use, despite me telling them both that my symptoms began prior to the medication use. I have since stopped taking the medication with no improvement in any symptoms. I have had 2 episodes of sudden onset of tachycardia at rest of over 150BPM with no answers after being admitted to the hospital. The doctors tell me that my heart is fine, and I am released without further investigation or advice on where to seek help. I now have a resting heart rate of over 90bpm, when just before the first episode, my resting heart rate was documented as being "bradycardic". I am on medications for anxiety, which help; however, I was put on the medication to "stop all of my symptoms", as I was told that my anxiety was causing them. My anxiety is due to being afraid of doctors and their lack of concern. The anxiety is some better with medication, but my continuous increase in symptoms has increased my depression. I have seen a Dermatologist, only once so far, who agrees that my urticaria overreaction is autoimmune related. He has ran testing on my thyroid, which has come back negative. He has not been able to biopsy any hives, but has seen pictures and I did have a positive skin reaction to dermatographia in his office. These reactions did not stop with allergy injections or daily allergy medications. I have been seen by nephrology due to protein, blood, and bilirubin being in my urine, as well as high creatinine. I was told that it was due to Adderall use and mild use of ibuprofen. I was told to stop using Adderall and NSAIDs. I have since stopped, however, no improvement. I was dismissed from that doctor as well. Asthma and Allergist have told me that my lungs are of a 66 year old woman without obvious cause and that my IgE is way above normal. I do have allergy factors, however, the allergist told me that I needed to be seen by Rheumatology; both of which dismissed this high level and stated that IgE has nothing to do with autoimmune disorders. I have been diagnosed with IBS and inflammatory bowel by a GI specialist in the past. These issues are still concerning to date.
I have had several lab tests over the last few years with most coming back "normal". I have looked through and noticed that on top of the positive ANA 1:16-1:32 neucleolar pattern, I also have had several CBCs show high RBC, HGB, HCT, as well as low RDW and Abs Lymph counts. I have brought these up, however, all of the doctors tell me to stop googling symptoms and dismiss me. I have noticed that on radiological reports, it has been noted that I have inflammation in my liver and spleen at times, but I have never been told this by a physician and would not have ever known if not for patient portal. I no longer have a gallbladder due to inflammation that was said to be result of pregnancy.
I am at my wits end. I am lost and have no direction to turn to. I have another appointment scheduled with a new Rheumatologist, and I am honesty afraid to go. I am afraid of being called a hypochondriac again. I do not want to be sick. I want to be a good, active Wife and Mother. I want to be able to do my job and help others. That is what is most important to me in this world and I feel that I am failing at both. This unknown disorder is being left untreated and is ruining my life, and my family's as well. Please help me. Help me figure this out so that I can be the best Mother, Wife, and Paramedic that I am meant to be. I am by no means the best in the world, I just want to be the best I know I can be. I do not want a miracle, I just want to live. I want to be more than just a chart on a busy physician's desk.