Yes, TSH 1.524, ENA screen neg, BUN 13, Creatinine .097, CK 211 (always a little elevated) ESR 41, Aldolase 4.8, CCP AB 3.2, ANA <1:80, ANTI DN 55, ANTI RNP <20, ANTI SMITH <20, SJOGRENS SSB, ANTI SCL 70, JO-1 ANTIBODY, C4 all <20.
I have had a thyroid ultrasound and it was negative.
I have seen 3 urologists, 2 rheumatologists, 1 PCP, and 1 neurologists. I am told that it may be some type of autoimmune disease but it is definitely not, lupus, sarcoidosis, or dermatomyositis.
Very ill feeling, especially during the mornings. Frequent trips to the bathroom makes it impossible to be at my desk and get the job done.
Yes. Last year after seeing the first urologist I went to get a pelvic exam. The doctor ordered an ultrasound. The urologist has already ordered the CT scan. I have had an IVP, cystoscopy, and colonoscopy.
CT scan was to make sure that the narrowing of the upj was not getting worse. Of course the CT scan showed no narrowing, it did not show any narrowing.
Even though I am at the age that I should be having night sweats I do not. I have had 2 hot flashes and then no more. I notice things more one night while sitting at the computer. I started to drip with sweat, and my back, the flank area was kind of throbbing. My right foot felt funny and I looked down and noticed that my foot was swollen. I took a better look and noticed that my feet and ankles were swollen. I feel ill all of the time but especially in the mornings. I have noticed that I can eat a nice meal early in the mornings but not in the afternoon. It just comes right back up, hence the visit to the gastroenterologist. He says that I have a little gastroparesis. He gave me reglan to take. It helps with keeping the food down but I still can't eat late in the afternoons because I feel worse in the mornings if I do. Through out the years I have had very odd symptoms. I chalked it up to having sarcoidosis because depending on which organ is affected my symptoms would vary. Now I am being told that I don't nor never did have sarcoidosis. My symptoms have been: Fever, which I do not have presently, weight loss, which I have none, chills, headaches, nightsweats, rashes on my face, hair loss, itching, muscle spasms, vision problems, ringing in my ears. The only ones presently is the sweating, ill feeling and I do mean ill and the rash, hair loss, flank pain and ankle and feet swelling.
My height is 5'9", 260 lbs. I have bad eating habits. I used to eat sweets all of the time because eating vegetables felt like I was eating a brillo pad. Now I eat in the morning a half a biscuit, 1 sausae pattie and 1 scrambled egg. I was drinking coffee all day, loaded with sugar and cream. Had to stop that because of the flank pain and frequent urination. Now I use a blender to blend, kale, carrots, pineapple, mangos and I drink this. I vary the fruits and vegetables. I find that my stomach can tolerate this better than solid foods. Today I have eaten nothing. I tend to feel little better if I don't eat all. In the evenings I can eat a salad or a sandwich but I must make this before 6pm or I will feel terrible in the morning. Otherwise that which is tolerated best are sweets. They are easier to digest.
Thank you very much. I know the weight is an issue. Before things took a turn for the worse I was done to 216 and making progress. But a well meaning physician wanted to help in the weight loss and added me to byetta injections - I gained 15 pounds. Then 2 other medications which resulted in the weight I have presently. It was a podiatrist, who was getting ready to retire-die, that took a look at my medication list and advised me to call back to the doc's office and have him remove me off the medications. He said that he gained 40lbs on the medicine and that I could not afford the forty pounds. After that I had a new endocrinologist who took me off all of the medications since I am not diabetic, don't have a thyroid nodule, and my test were normal. Hence the present struggle.
*****Thank you for giving me a fresh look at my situation. You have been helpful.******
It is going to be a challenge to get someone to look at carcinoid syndrome. But I will start with my PCP to see what she thinks. Will let you know.
Requested tests results. 5-HIAA - Normal and Chromogranin A - normal, both within normal range.
I am going to just navigate my various symptoms as they come. I don't want to do symptom suppression with a host of medications that come with their own array of side effects.
I have a new PCP since my other one has decided to reduce her work load. It is understandable. I don't expect nothing more than to have someone to help manage my blood pressure and receive the various reports from the other specialists. I don't go to the emergency room any more with my chest pains, I find it most frustrating.
I know that you are not able to grasp the full scope of my medical issues in a brief setting. Appreciate the suggestion about carcinoid syndrome.