Why Don't Doctors Know This Stuff?

[Epson]

While doing some research on my lack of kidney function I found this article, which really sums up the whole problem with Sjogren's and the idea that is is just some little old dry eyes and a dry mouth.

Check it out at http://www.wellsphere.com/general-medicine-article/sjogren-s-syndrome-and-kidneys/439691.

This is a must read for newbes and something you might want to have in your back pocket when you go to your next doctor appointment.  Sjogren's can jack you up big time, so don't let some pinhead tell you your over reacting or your a hypochondriac.

While most of you will never be affected by this, it is possible and you need to have blood work done a couple of times a year, so you know what is going on in your body.

[kimbo]

Thanks epson, I read it.

I have a rhuemy who seems to ck well and frequently.
Because I haven't fell into any severe complications besides paratid swelling/discomfort and the customary SJS dryness, It's good to be up with what could be major concerns.
This information makes me wonder what can prevent the kidney complications.
Epson how does your dr treat your kidney problems?
kimbo

[irish]

Epson, I haven't read that link, but I would bet it refers to RTA or Renal Tubular Acidosis. I think that docs didn't know much about this and they are probably just getting more educated as time goes by. Seems like Sjogrens patients need every ologist that there is.

LIke I have told some of my docs--learn all you can about Sjogrens cause you are going to see a lot of it. Mainly because it is now being talked about and research is coming up with more info about us. Not just eye and mouth. We are hugely complicated people who have all the same symptoms (almost) but yet we are vastly different. Good luck Epson, Irish

[Scottietottie]

Hi - good link.

It does mention Renal Tubular Acidosis but says it is rarer than Interstitial Nephritis. Basically it says that blood tests to do with renal function should be carried out at least twice a year on people with AI diseases.

Take care - Scottie 

[ruby52]

Great link Epson.Another scribble on list new Dr. must know about.
                                                                             Ruby

[quiger]

Epson,

This was an interesting article. It seems like so many of us are having kidney problems now. Hopefully we will get some answers and it will be good news for a change.

Last week when I had a ct scan of mine, the doc wrote no contrast in capital letters on the order. He then told me, no injections and don't drink anything. I had no idea why. Then found out that the "drink" was a dye they wanted me to take. Of course I then understood what the doc meant and I refused it.  Bottom line was that they then told me that dyes and contrast could have shut my kidneys down. Heck, who knew that? I'd had an ultrasound the week before and there were no dyes involved. What bugs me is that when the doc wrote the original order for the ct scan he wrote it with contrast. Then when I asked about my bloodwork results being so high, he changed it. Good grief didn't he look at it or did he just look at the untrasound report? Anyway, I had the scan and he made an appointment for me with a kidney specialist on the 12th.

What we don't know sure can hurt us. Thanks again for the link.

quiger

[Epson]

Kimbo,

I don't know what the treatment will be yet, I don't see the doctor until February, unless I can get the appointment pushed up, but I know what the treatment was for my dad.  His treatment consists of various medications and diet restrictions, he is borderline dialysis now, but the is also 86 years old.  He had no problems until he was 80, I'm only 56 and my CFR is what his was a few years ago.

[quiger]

Epson,

Were you able to get on the cancellation list?

quig

[Epson]

Guiger,

I didn't get a chance to yet, maybe Wednesday I will ambush them when their in an office close to the house, but I did get my urologist to set me up for an ultra sound and that might tell me the whole story.  At least I don't have to wait to see the nephrologist and have him order an ultra sound.  This puts me weeks ahead in determining what is wrong.

The first thing the nephrologist will do is order blood work, come back for the results and then they order the ultra sound.  I have been through this with my Dad.  The urologist called me today and said the surgery he performed would not cause damage to the kidney, but if the tumor impeded the flow of urine to the bladder, it could cause scar tissue to form.  I'll just have to wait and see.

[SarahMurch]

Oh my goodness, you don't know how much this post means to me! 

Since September I've suffered awful back pain, sweats, burning hot urine which inflames everything and feel really unwell. It has really restricted me and I'm suffering severe low mood due to the isolation.

An x-ray shows a calcified little piece which could be in my kidney or apparently they're quite usual and harmless in the colon. The pain I feel certainly doesn't feel harmless  My urine tests are strongly positive with white cells and traces of blood but not always showing infection. Luckily I've a scan now booked for Friday but I'm going to take this article to my doc in the next couple of days and get him to refer me to a specialist at the hospital as soon as possible.

Thank you so very very much for the great info!

sarah x

[BonusMom]

Epson
Glad that you're able to get the US prior to the appt with the specialist.  I hate seeing a specialist onlt to have to await the scheduling of everything and all of the test results.I'll keep a good thought

Lana

[Victoria05202000]

   Ummmm.....that was me asking Julia that question.  She was the one that wrote that post on her blog and directed me to here.  She is my angel and a good blogging friend. 

I guess I need to update everyone on my kidneys and the hopefully upcoming transplant.

And to answer your question Epson.....Doctors think this is extremely "rare" in Sjogrens.  I think they are sadly mistaken.  That is why I have my blog.  I want to educate others that are going in a similar direction as I have in hopes we can stop or hold up the kidney damage.

Take Care!
Vicky

www.sjogrensandme.blogspot.com