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DrRussMD, Board Certified Physician
Category: Medical
Satisfied Customers: 64315
Experience:  Internal Medicine--practice all of internal medicine, all ages, family, health, prevention, complementary medicine, etc.
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I am a 58 year old Afro-American who in the 80 and 90s I

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I am a 58 year old Afro-American who in the 80' and 90's I was told that I had a narrowing of the right upj. Last year I began to have periods of sweating, flank pain, and swelling of feet and ankles and feeling not well all of the time. My blood pressure was up even though I take four medications to control it. I went to an after hour clinic to see if I had an UTI. It was negative. I followed up with my urologist to see if there was a worsening of the upj. A CAT scan was done and they found no problem. They didn't even see the narrowing of the upj. However, after visiting 3 urologists I was found to have what was told to me enlargement of the calyces of the right kidney. The doctor said that it might be something that I was born with. I still go to the bathroom quite frequently and have some flank pain on and off. I monitor my blood pressure to make sure that it is controlled.
I have in the past been tested for a pheochromocytoma and it was negative. My BUN was normal, my GFR was 58, Creatinine levels were normal. I have been tested for lupus, was diagnosed with sarcoidosis (which now I am being told that I probably never had.) I am in a quandry as to what to do next. I am constantly missing work which is putting my job and insurance coverage in jeopardy. I also notice that I have a tendency to feel worse the next morning after eating a full meal during the day. I visited my gastroenterologist and was told that I have a little gastroparesis. I was prescribed Reglan it helps with keeping the food down but I still feel bad the next morning. So now I am not eating and drinking as much to lessen the ill feeling and to cut down on the going to the bathroom. I have seen every type of physician except a nephrologist. What are my options? Oh, my PCP told me I just may never get a diagnosis.
Hello from JA
The urinary issue does not seem to be the cause here

Have you had any other tests?
Thyroid studies?

If so, what was the TSH?
Customer: replied 4 years ago.

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.

Your sed rate is elevated to the level of smoldering infection, autoimmune disease that is not very active, hidden malignancy, etc.

What types of doctors have you seen?
Customer: replied 4 years ago.

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.

It can be autoimmune disease that is not defined as of yet.
What symptoms are most affecting your job currently
Customer: replied 4 years ago.

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.

I assume you have had
Urodynamic studies?
Pelvic exam , pap and ultrasound
Customer: replied 4 years ago.

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 pending of what?
Customer: replied 4 years ago.

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.

Tell me more about the sweats and other symptoms
Customer: replied 4 years ago.

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.

This sounds hormonal.
I would make sure they check for carcinoid syndrome...rare but similar symptoms, although you are not reporting the diarrhea.
A sex hormone panel and adrenal function testing should be done.

I can help further if you tell me
your height and weight
What you eat meal to meal, typical day

Customer: replied 4 years ago.

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.

The weight is creating a vicious cycle, putting pressure on the bladder but also creating an inflammatory state, which in turn causes more weight gain and less weight loss.

check everything I said above.
In addition, do a nutrient dense diet which might help stabilize all of these symptoms and create natural weight loss as long as you exercise a bit, and get active as possible.

The diet, in order of preference in quantity, should look like this
leafy greens
green veggies
other veggies
whole fruit, beans and peas
Whole grains no yeasted breads, dry cereals or anything refined
Seeds and nuts, but cut out seeds if you have any diverticulosis.
A little tofu or tempeh daily
A little high quality soy or coconut milk yogurt

The soluble fiber in this strategy will stabilized colon function in about 6 to 8 weeks, then about 2 or three helpings of animal foods a week, preferably fish, can be added back.
See the book Eat to Live by Dr. Joel Fuhrman, for instructions on this type of diet.

After 3 months, I would check a sed might be surprised, pleasantly.

OK. If you have further questions or details, use reply to expert.
Otherwise please choose a positive rating . But, still come back if you need to…think of something later, etc. Bonuses are appreciated.

DrRussMD and 3 other Medical Specialists are ready to help you
Customer: replied 4 years ago.

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.******

let me know how it goes
Customer: replied 4 years ago.

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.

Customer: replied 4 years ago.

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.



You are welcome.