Please help

[mamabland]

For the last 1 1/2 years I have blood in my urine, bilateral lower extremity swelling... I posted a question for one of the family physicians, it gives the complete background if you have access to that and is under my profile.  My doctor promised on last visit to "call" a rheumatologist and possibly a nephrologist to see where he needs to go next with diagnostics.  To date he has only give me a referral to a psychologist, one that my insurance will NOT cover.  He assured that after 4 visits he finally has a grasp on what my complaints are and feels certain there is an autoimmune process going on. He has yet to order the pyelogram or the cystoscopy that he said he would.  The more persistent that I am, the more pissed off he gets.  My entire lifestyle has changed in a matter of months.  I went from working out and walking up to 3 miles a day, to being bedridden when the worst of the symptoms hit.  I get about a 7-10 day break every 6 to 8 weeks in which the pain and fatigue and swelling is tolerable with the strong MS contin pain medicine he has me on.  This medicine does increase my ability to function and my activity level, but also leaves feeling "numb" like life is just going on around me and I am not really part of it.  I WANTED to see the psychologist to help with the feelings of loss of my health. . Yes the baseline blood work and rheumatologic blood work came back negative.  Does this mean that I am crazy and we need look no further?  During my last visit, after telling me he would call specialists to get diagnostic advice, his last question to me was whether I am bi-polar - due to my talking fast - trying to get him to listen, and due to my increasing concern over what is being missed.  His question before this (and although I have a background in medicine I am not a doctor) was whether or not I had ever seen this combination of symptoms and how it was puzzling it was to him. Can you give some advice on how to proceed?

[Kevin Pho, MD]

I agree, that either a nephrologist or urologist would be reasonable consults at this time.

There can be a variety of reasons that blood can be in your urine, and the most serious, bladder cancer, needs to be excluded.  I agree that a CT pyelogram, and/or a cystoscopy can be considered.

Regarding the leg swelling, problems with the kidneys can lead to this.  Also, heart disease can lead to lower extremity swelling, and, if this is suspected, an echocardiogram can be obtained to exclude congestive heart failure.  

If you feel that your physician doesn't listen to you, it's time to obtain second opinion.

These options can be discussed with your personal physician.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin Pho, M.D.

KevinMD.com
Twitter.com/kevinmd

[ZJR]

HI, How old are you? I started to have weird things happening to me at age 41. I started becoming allergic to everything, from Flu shots to dialating eye drops. I started feeling leg numbness and tingling, heart palpitations,. panic attacks and IBS symptoms. I lost sense of smell for a while. I could not feel my tongue for a couple of months and I went to every doctor possible for every test available . Everything came back perfect, except that I was in perimenapause. I think this and menapause take over our bodies and hormones affect every part of us, especially our minds. The blood in the urine is definitely a physical thing, but my sister gets that from urinary tract infections. I would have a complete blood work-up done, including hormone levels. Good Luck, I hope everything turns up well. ZJR

[mamabland]

Dr. Pho,
I thank you for the time and consideration of my problems.  Unfortunately, I live in a town that is noted for its lack of good medical practice.  One of the docs that I used to work with said he wouldn't touch any of the practices or the hospital here with a ten foot pole, either professionally or as a patient.  I am unfortunately limited by my insurance.  
Last year I went to the ER because the leg swelling had gotten so bad.  They told me that I was having an MI and forgot for over an hour to tell me that I wasn't and that the EKG was done wrong.  Still, they admitted me to AZ Heart Hospital and I am in perfect cardiac health.  So I think that kidney specialists are my next goal.
Again, thanks so much.
Terri