Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Kidney Pain http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1335379622 Message started by kimtg68 on 04/25/12 at 07:47:02

Title: Kidney Pain
Post by kimtg68 on 04/25/12 at 07:47:02

Three weeks ago I had burning when I urinated and strange somewhat foul smelling urine. About 4 days into it my kidneys started aching. I was SURE I had an infection. Local doc took a urine sample but no infection was found. I was shocked. I increased my water intake and that helped some. Now I'm having the kidney pain again, pain on both sides from high up on both sides front of stomach, urinating burns and smells again. I've drank 3 twenty ounce bottles of water today and working on number 4 but my kidneys still hurt. Any suggestions?

Title: Re: Kidney Pain
Post by Starflower on 04/26/12 at 01:07:14

When is the last time you had a CMP (complete metabolic profile) to check your GFR (kidney function)? It's a simple/cheap test. Two other thoughts come to mind... kidney stones... or an autoimmune disorder. If you pee into a cup is your urine foamy? That's a quick test for protein in your urine... you can do it yourself at home.

Honestly... I would get a second opinion, preferably from a specialist.

Heather

Title: Re: Kidney Pain
Post by Doozlygirl on 04/26/12 at 11:23:34

Kim,
I wonder if the test your doctor ran only ruled out bacterial infection, because those symptoms could be caused by candida, a yeast infection. Early on, I had those symptoms quite regularly, and swore I had a UTI or kidney infection, and the culture came back clean. It wasn't until I saw the right doc who recognized it, and taught me how to treat it, that those symptoms went away. They ALWAYS flared after I took antibiotics, ate yeasty bread, or just before my period. I blame previous antibiotic use on the chronic candidiasis. FYI, I have class IV IgG severity to mold and candidiasis.

Let me know if you would like some more information on candidiasis.

Good Luck, Lyn

Title: Re: Kidney Pain
Post by kimtg68 on 04/26/12 at 13:14:00

Thanks ladies. I think I'll get an appt with PCP. I did have some testing done recently that included kidney function and results were good.

Title: Re: Kidney Pain
Post by PamH on 04/27/12 at 08:44:51

Last year I had severe kidney pain. Dr. ran a test ... I had blood in my urine but no infection? He thought I had a stone. Had a CAT scan done, no stone. The pain still comes and goes occationally. I don't know what to do about it either. I suppose if it gets incredibly bad I will go back to my GP. not sure what he would do though.
Can this just be a Masto thing??????
Be sure to keep us updated!!
Pam

Title: Re: Kidney Pain
Post by kimtg68 on 04/27/12 at 10:42:34

I have had kidney/bladder/UTI issues on and off for nearly four years now. I too have had blood in my urine but no infection (no blood this time). I've also had high protein but no infection (again not this time). I emailed my mast cell doctor at Vanderbilt about it and his assistant responded saying it's not a mast cell issue and should be seen by a different specialist. HOWEVER, in going through my research this week I came across the possibility of Interstitial Cystitis which Dr Afrin actually said, during a review of my medical history, is not uncommon in patients with mast cell disorders. So I'm nibbling on that thought right now.

Title: Re: Kidney Pain
Post by kimtg68 on 04/27/12 at 11:01:09

Hey, hey, hey! Look what I just found. The following link is a paper on mast cells and Interstitial Cystitis (IC).
http://mastcellmaster.com/documents/Interstitial-Cystitis/Mast-cells-IC-Urol-2007.pdf

Title: Re: Kidney Pain
Post by PamH on 04/27/12 at 15:40:55

Good research!

Title: Re: Kidney Pain
Post by ruth on 04/27/12 at 19:08:49

If you search this forum you will find discussions about IC, Ramona, knows a lot about it and has posted about it in the past. Good luck, not fun at all.

Title: Re: Kidney Pain
Post by kimtg68 on 05/02/12 at 03:21:54

Thanks Ruth. I remember how bad poor Ramona suffered with this. I've tried to search for some of those posts but as usual (operator induced ignorance) I am doing something wrong. I only pull up like two posts. SIGH! I'll try to wait for a good brain day and do the search option again.
Thanks:)

Title: Re: Kidney Pain
Post by ruth on 05/02/12 at 08:27:08

Hi Kim, I tried a quick search and found more than that, you might need to select parameters at the bottom, I chose posted in the past year, and the maximum number to be displayed, which is 15.

Ruth

Title: Re: Kidney Pain
Post by iamnotalone on 05/02/12 at 13:23:37

OK;
I read the research-when my scroller wasnt "jumping around". Once again-sounds very familiar. I kept going "That's ME!". Endometriosis, check;Panic/Anxiety disorder,check; Pelvic pain, check;Hysterectomy,check; My GP just said to do Kegels. >:(
I have been leaking ANYway!!! :-[ I cant go anywhere without going to the restroom First anymore. :(
Idk what to do at this point. I am in a flare, which probably doesnt help. Kim-I like your phrase "good brain day" ! :)
leaky

Title: Re: Kidney Pain
Post by kimtg68 on 05/02/12 at 14:32:11

OK everybody! Get ready to LOL! I've been on this forum for....ummm....maybe close to two years? It may be that my brain has lost a permanent function and I just don't remember BUT I think the only way I've ever used the SEARCH function was in the upper right corner with the magnifying glass next to it. I had NO clue (again maybe I've just forgotten) there was a tab in the upper left side specifically designed for SEARCHING! OMG! LOL! How cool! I love it! hahahaha
Thanks Ruth for your advice which led me to scratch the dickens out of my head but NOT give up until I found 'something' resembling what you were talking about!!
iamnotalone-you know, I like that phrase 'good brain day' or rather I like the idea of 'having' good brain day's which really are quite few! LOL :D After I read that research I was tempted (and still am) to send it to the doctor's assistant at Vanderbilt who told me my kidney symptom had nothing to do with mast cell disorder and to see a different specialist. I want to send that paper but not sound like a smarty butt. Yet I think it's important that they recognize that indeed IC (Interstitial Cyctitis) is indeed a mast cell issue. What do you all think? Should I send the paper? Perhaps bring a copy of it to my next appt to leave with them?

Title: Re: Kidney Pain
Post by iamnotalone on 05/02/12 at 15:41:28

Kim;
YES Yes and yes - send them that paper !!! Smarty-butt nothin'!
You'd be doing them(and others like us) a favor! :)
As for that other search tab on the left? Im STILL searching ::)- definately NOT a good brain day. Bad brain! Bad brain! >:(
Or as Red might say--- Bird Brain!
:D ;D :'(
lori

Title: Re: Kidney Pain
Post by ruth on 05/02/12 at 18:38:03

No problem Kim, glad you had a little victory there!

I tread so carefully with giving things to doctors, as if we don't ave enough challenges without having to tiptoe around a doctor's precious ego. However in our own best interests we need to sometimes. I just try to do it as non-confrontation ally as I can, maybe even with a bit of ego-stroking. So I might say I want their advice about it because I am confused about what I am reading, or that new information conflicts with what I have been told before or by another doctor. Having said that, who I am to talk, I haven't managed to get far at all in getting a diagnosis for my son, but our current doctor has read articles and agreed with me about them, she hasn't gone far enough yet in actively pursuing it but she is still on board and listening and respecting me.

Ruth

Title: Re: Kidney Pain
Post by texan1960 on 05/22/12 at 09:24:11

Kim
Kinda sounds ICish...if u have these episodes again find an IC knowledgeable urologist...there should be one at vandy. If u can't find one...pm me, I have one a couple of hrs to east at ut hosp. If they are an IC knowledgeable uro, they knnow the mast cell connection most likely. Had it for 12 yrs and without the help of a specialist don't know where I would be...also mine gets the connection. IC is not curable but treatable..and it is important to get treatment...mine is moderate indolent...take care

Title: Re: Kidney Pain
Post by kimtg68 on 05/22/12 at 17:39:08

Thank you very much for your reply. It took me a month for my kidneys to stop hurting but I'm finally better. I think I should start looking now for a doctor who knows IC so when it happens again (probably in a few months) I will have someone lined up.
Thanks again :)