- CASE FILE
Is it an AUTOIMMUNE DISEASE? I can't count the number of Dr's I have seen. None have been able to find the cause of my years of suffering
ABOUT THIS CASE FILE
I have spent the last 23 years going Dr to Dr, referral after referral only to be told.."you have such an interesting case." I don't want to be interesting. I want to feel better. At one point I have gained 30 lbs in a month and was asking for help. Thyroid tests were "borderline" or normal according to the Dr. I had a hysterectomy at only 29 due to complex cysts on my ovaries. Thankful it was not cancer. This was my first of many medical procedures, surgeries and hospitalizations. My diagnosis's have included pseudotumor cerebri, Hashimoto’s thyroiditis, graves disease, suspected Cushing’s disease pneumonitis, pneumonia and bronchitis many times, pitting edema, gall bladder disease, low hemoglobin, vitamin deficient, bowel problem, medication absorption problems, gestational diabetic, insulin resistant, empty sella, metabolic disorders and "unknown autoimmune" disorder. These are only a sample of my "diagnosis" I have seen cardiologist, endocrinologist, nephrologists, gastroenterologist, neurologist, rheumatologist and even went for a 10 day stay at a teaching hospital. At that point I was gaining up to 22 lbs of swelling in days. Still no answer.
My endocrinologist did RAI (radioactive Iodine) to kill my thyroid. I take a regular dose of Levothyroxine that my body does not use. My TSH has been from .002 to 97 and everything in between, but very rarely within normal limits. Currently it has gone from 2 to 20 to now 69. All while following the same dosage and guidelines such as 30 minutes before anything else by mouth first thing in the morning. I recently discovered I had a gene mutation through DNA testing. MTHFR x2. I have been told this may cause problems, but I don't even know who to ask for help anymore. I have begun to accept that I am just going to be tolerating the symptoms and being ill for the rest of my life. My husband of 30 years has been a huge support, as has my family. There are times when I have been home bound for months due to side effects of medication, Dr's prescribing the wrong thing and making me ill and general inability to function. After ANY stressors I get sick. if there is a major even I get really sick. I was in the hospital last summer for "ground glass opacity" features in my lungs. They "think" it was autoimmune pneumonitis. I was prescribed prednisone after 3 antibiotics and was still very sick, sleeping 22 hours per day unable to wake up. I started taking 40 mg of prednisone and after a few days my swelling was mostly gone. I felt amazing for about 3 weeks, cleaned and enjoyed things I have not been able to in years. Then, exhaustion, swelling and symptoms all came back. I took 40 mg for 2 months. I was tapered off prednisone over a couple of months to minimize the side effects of coming off of it. What I realized during this time is that I forgot what I used to feel like, I did not remember what it was like to wake up and have energy, to to sleep through the night, to not get sick every other week and to feel...healthy. I want that back. There is something that is being missed..please help me find it. The pictures below demonstrate the amount of swelling that may happen in a few days.
I have swelling above my collarbone that goes from very large to barely noticeable on a weekly basis. My center body is obese while my legs and arms are not so much. My neck and face can swell remarkably from day to day. You can see in the photos..some are weeks apart.