what should i expect

I have just recently been told that i have MSK and RTA and frankly, I have no idea what to expect.  I'm a bit terrorfied.  So with all of you MSK veterans, what should i expect in dealing with all of this???

[ChitChatNine]

WELCOME to this great MSK Community!

May I ask what led to the diagnosis?  Do you have constant stones?  Repeated Urinary Tract Infections?  Pain .. all the time?  Intermittent?  Family history of stones?  

All those questions may be able to help us give you some advice based on our own experience or those of others we know, etc.

What tests did they do?  24hr Urine?  Results?  Bloodwork for metabollic causes?

And lastly, what type of Doc diagnosed you .. Uro, Family Dr., etc.?

Hope you don't think I'm being invasive, but it helps give us clues.

In the meantime, there is an excellent link on top of the page to HEALTH PAGES where Shelly added a great FAQ's about MSK .. signs and symptoms.

Shelly may not be feeing well ... I haven't seen her online;  Usually she posts daily .... she recently had a bad UTI going on ... I hope she is ok.

Cheryl - MSK with Calcium Oxalate Stones

[ChitChatNine]

What is RTA?  Not familiar with that acronym.  Thanks.  I'm going to start an Acronym page on top in the health pages.  If you can think of any others do let me know .. so far I have MSK, UTI and now RTA.

Cheryl

[ChitChatNine]

I have been through a whole bunch of 24hrs.  In october i had a really bad stone passing and so i went into the ER and after being there for nearly 10 hrs the doctor told me that i had close to 50 stones in my kidneys and refered me to a nephrologist from tacoma who comes down to olympia sometimes.  

My lab work had shown that i had high levels of calcium oxolate and EXTREMELY low levels of citrate.  My citrate was at 64 when it should have been 300 +.  
I have had many many many stones since i was 12.  I began to have them every 2 to 4 months sometimes 2 at a time, but the specialists wouldnt see me because i was so young.

I am now currently taking potassium citrate and am on a very very strict diet and i am dealing with it very poorly.  my dietitian believes that i have adjustment disorder . . . i dont know tho

OH and RTA is renal tubular acidosis.

And another thing . . . i havent quite figured out how to reply to a post (hence why i am sending this in a message) so fill free to copy and paste this)

(I think I filled her in on how to post .. tricky for newbies!! . Cheryl )

Thank you

[ChitChatNine]

Ok .. I will copy it .. what you do is click on the original post ? that you posted .. the bright dark blue letters and then all the answers come up and you will see blank spot to post your answers~!

► SO WHO WOULD NOT HAVE A HARD TIME ADJUSTING to a life like this?  HUH I ask these so called professionals?  Unless there is something I'm missing or you haven't shared, this is crazy to me!!!!!

► Potassium Ctirate alone will do a # on your GI system accepting mega citrate like that .. I , for one, cannot take the Urocit-K which proably is what you are taking ...oh my gosh .... I am so glad I have met you.

► Does your Neph understand what daily life is like for you?  Does he understand if you eat too much protein you are in pain?  I couldn't drink fruit juices without pain.  

The RTA I am not familiar with but Shelly will know more .. much more on that type of concern ... I am concerned bcz I haven't seen her ... she posts daily.

The stones tend to form bcz of the puddle of urine in the sponges deep in the kidney... medullary is inside layers of the tissue within and that is WHERE WE FORM OUR STONES .. not like most stone formers whose stones pass out ours sit in the sponge waiting for infections and making pain for us.  They are trapped in the sponges.  They grow and new ones form.

Did the Doc suggest Magnesium at all and low oxalates?

Have your stones been tested ?  Calcium Oxalate usually is a MSKer's name to fame. And it sounds that way based on your metabollic results you've shared.  

Cheryl

[MSKshelly]

Sorry I haven't been on acutally this post did not come to my inbox..., I have been spending many hours doing research trying to find some answers to some of my own issues..., and can only sit at the computer for shorts periods,,,,

I posted this before but this is a great link to an article that can answer many of your questions!  I too have lots and lots of stones in both kidneys, they do not even attempt to count them!  I started having infections at about 3, and had my first stone surgery at 19, though I had surgery to remove an ovarian cyst at 15 and adhesions at 16 that I truly believe were stone pain!  My understanding is that the potassium citrate UROCIT-K should stop your kidneys from making new stones!  This is important to what you can expect in the future! (I can not take it because of the chronic infection issues!)


http://www.emedicine.com/med/topic1413.htm

According to this article most people live normal lives!  Only about 10 % of us have a lot of problems.  There are ways to get the RTA under control as well, and this may help you to know have a lot of future problems!  As often as you are passing stones, I would encourage you to get with a URo that will work with you.  If the first one blows you off, keep looking!  It might help them and you if you chart your symtptoms and pain levels.
There is a free or very cheap for the full pain diary!  It is a great way to keep a record and then print out charts that you can take with you to your doctor so they can see the impact it has on your daily life.  the link to that is at
www.reliefinsite.com

Keep in touch and let us know how you are doing!  I hope these links help!
Shelly