- CASE FILE
I'm aware that I'm rare or am I?! Diabetes Insipidus, Interstitial Cystitis, Thoracic Outlet, Fibromyalgia, and Migraines, POTS...
ABOUT THIS CASE FILE
If someone would have told me that being diagnosed with Diabetes Insipidus at age 6 would probably be the most "normal" diagnosis I would ever receive, I would have doubted their sanity. Now, looking back, this statement adequately describes my journey. At age 6, I was diagnosed with Diabetes Insipidus, origin unknown. My symptoms came on suddenly, I became unable to retain any water, and became severely dehydrated within a matter of hours. I was hospitalized for over a week and underwent testing that included numerous scans, MRIs, water deprevation tests, spinal taps, etc. There was no evidence of a seizure and no traumatic head injury, I was put on Desmopressin (Vasopressin) which I still take, I am 39 years old. I have always become dehydrated very quickly, staying hydrated has always been a challenge for me. My health was fairly uneventful (besides the DI) until 4 years ago. I have yet to make sense of my situation, I will be undergoing my 7th surgical procedure in under 4 years. The first of the issues that started these whirlwind four years was a series of what were diagnosed as reoccurring UTI's. The severity of the pain and the frequency of the episodes led me to a Urologist who performed a Cystoscopy and diagnosed me with debilitating Interstitial Cystitis. I had the hallmark characteristics of IC from a cystopic standpoint and was put on Elmiron. Although it provided mild relief, the only thing that provided me with significant relief was surgical hydrodistention with the use of DSMO. I underwent this procedure four times. My bladder symptoms were accompanied by joint pain and fatigue that can only be described as disabling and life altering. I continued having migraines that I have had since I was much younger. As time progressed, my joint pain worsened and began having an even larger impact on my life. I was seen by a Rheumatologist who diagnosed me with Fibromyalgia and generalized Autoimmune Disease. About 4 months after this diagnosis, I slowly began losing strength in my right arm. I began dropping things, had swelling/numbness, and lost my ability to grasp anything. I worked in an Occupational Health Facility and my symptoms escalated to the point that I could no longer draw up syringes nor palpate for veins to perform venipuncture. I was diagnosed with Thoracic Outlet and underwent a rib resection and scalenectomy. After months of physical therapy, I regained some use of my arm and was placed on Gabapentin for nerve damage. The fatigue intensified and although my arm was improving, my joint pain and fatigue grew more intense. I began having chronic kidney stones, I stopped counting after having five of them. After about 9 months post-op, I began having symptoms in my arm again. I couldn't hold anything, I had no grip strength, and my swelling was back with a vengeance. The pain in my arm, axilla, hand, neck, and shoulder was starting to become excruciating. After undergoing testing, my Vascular Surgeon found that I was having a recurrence of Thoracic Outlet. He was stunned to find such a large amount of scar tissue in such a relatively short amount of time. He removed the scar tissue and repaired the arteries. Once again, I underwent Physical Therapy, and tried to return to work part time. While at work, I had several episodes of blacking out while going from a kneeling position to a standing position. My heart rate would change drastically in a mere seconds. I was hospitalized after a particular incident and underwent testing for tachycardia. I was put on Digoxin, and although there was no definitive diagnosis, the Cardiologist who treated me stated that my issues appeared to be orthostatic and dysautonomic in nature. About a year after this episode, I had to undergo a hysterectomy. I was overwhelmed to say the least. Every day was a struggle, I was exhausted to the bone. Somewhere in all of this I was diagnosed and treated for hypertension. Forwarding to the present, I began having pain, swelling, and loss of coordination (again) in my right arm. It came on quickly, intensely, and without warning. After vascular testing and a nerve conduction study, my Vascular Surgeon called me into his office and stated his concerns. I was having another recurrence, he had never seen this is his 42 years of practice, and it WAS NOT normal to be producing this much scar tissue. Not only would it have to be surgically removed (again), it would be more complex than the last two times. He stated we have to find a reason for the scarring. It will happen again and the amount of scar tissue will increase. I am scheduled for surgery on Friday, and then we begin the process of trying to figure out WHY my body produces so much scar tissue. The fatigue is not describable. I struggle to maintain a normal blood pressure, pulse, and glucose. I am a NON DIABETIC with blood sugar checks that sometimes reach 300. My joints ache, and I am mentally and physically drained. My Vascular Surgeon's assistant mentioned Vascular Ehler-Danlos Syndrome. My Vascular Surgeon mentioned a multitude of Connective Tissue Diseases. I will be seeing three specialist in less than two weeks who will assist my surgeon in finding out what the cause of all of this is. Again. Each day, I lose more of myself to the growing list of conditions that I've been diagnoses with. My beautiful family deserves to have all of me, not just the parts left after fighting to perform basic functions every day. I am desperately seeking answers. Thank you in advance.