I promise to write more later; I am diagnosed with MSK with stones ..... my urologist who is world reknowned said, yes, 1% possible serious complications are possible.
Does your kidney function ok now? All tests show ok, but reveal MSK? I ask this bcz if the answer is yes you most likely will be ok!!!!! Stones may be a lifelong problem; or they may come and go .. I am stone free for a few months now and have not produced any in 3yrs .. YET others on this community continously produce them.
I am very pleased your Dr. referenced this site. WOW and thank him/her for us!
I am sure others will jump on in the thread with even more info ...
WELCOME to the COMMUNITY!!!!
You have found a wonderful place to give, get, gain and share advice!
Cheryl MSK w/stones (calcium oxalate)
well they havent preformed the tests yet...i went today to get the 24 hour urine test that I am going to start tommorow and they want tons of bloodwork when I bring it back in...BUT i just got some MORE bad news...about an hour ago the hospital called where I had my CT done in the ER and told me they found a spot on my liver during the CT scan??...they want to run more tests on that...I was pretty shaken up when she told me on the phone that I dont think I caught everything she said but seems like she told me that I have a dense spot on my liver and they need to run a tube into my liver to put dye into it and run another catscan...so I am pretty shaken up and VERY scared right now....please keep me in your prayers...I have 3 lil baby girls...I cant be sick...and I am gona keep all of you in prayers also!
I have a good friend on the thyroid community who is undergoing major liver tests right now and has had many tests ... maybe she can help you in that regard with ?'s to ask, etc.
I recommend you write all your ?'s down and start a diary-type book to jot down symptoms, ?'s, meds, tests, results, etc. bcz it makes it much easier when you go from specialist to specialist.
I have had cysts on my kidneys that come and go.
Please know you can PM me anytime ... we are here for you!!!
grr just delate a long post and don't have the energy to redo it.
Welcome... I have MSK with both kidneys so full of stones that they can't count them.
I also have a chronic infection, Interstitial Cystitis,and Pelvic congestion syndrome.
I know it is scary but please know there is some exciting new research going on in this area, There is a new procedure that can clean out all the calcifications in the kidneys.
I have been referred and hope to have this done in the weeks to come. At that point I will post all the info. Just know there is hope on the horizon, oK
Also 90% of the MSK is benign for the 10% of us with problems they are finding we also have a metabolic issues that cause the problems. Hopefully your tests will find these and they can put on medication like UROCIT-K which will help prevent you making new stones.
Polycystic Kidney disease would show with LOTS of cysts in your kidneys. Did they find any on the CTScan?
Here are some good articles on the basic info.
I will post more as I am able! Welcome, and one of my favorit words of advice is
"Don't live a lifetime in today...., basically the what IF"s will get you. Tomorrow everything can turn around.., Enjoy the good days... and rest on the bad!
Trust me this is survival to your santity and your kids. None of us can handle all the things that might happen with this disease etc. nor can I handle passing all the stones of tomorrow, I can only deal with the one hurting right now! My oldest son is in Iraq...
this was the one thing I never wanted to have to go through. Yet, the Lord has protected him over and over.. better then I ever could! It is not easy knowing he is constantly in danger but I have to go on living too,
I do hope this helps you stop and enjoy the sunshine and the smile of your little ones that are changing so quickly from day to day. Just don't let the storms of tomorrow rain on your today! However that said this is place for you to vent those feeling and fears so you can go on! We all have down days... and that's what it is hear for!
Hi - I'm so sorry for all you are going through!!! I am the one that ChitChatNIne mentioned from the thyroid disorder community. The test that they are talking about is called a ERCP. I haven't had one but that's what I'm scheduled for next month. Basically, the way my GI explained it to me, is they run an endoscope (scope through your mouth into your stomach) while you are unconscious (thank goodness). From there they go into your bile ducts where they insert catheters and force an iodine solution into them then take x-rays to see if there is any blockage.
I understand the feeling of "I can't handle one more thing!". Prior to finding a small nodule on my thyroid through a completely unrelated scan in '03 I was fine. Now, five years later, I've been through two thyroid cancer surgeries, one recurrence (and it looks like I'm having another one). I've also had to have my gallbladder and ovary removed. The treatments have also caused arthritis and, since my last radioactive iodine thyroid scan horrible liver pain (hence the ERCP coming up because they can't figure it out on any of the other tests I've been through). Oh, and on my last thyroid cancer scan it shows a small spot in my head.
Yeah - all of this $uck$ but, like you, I have children. I'm a single mom and I don't have a choice but to go through all of this garbage to stay around as long as possible for them.
Trust me; you won't remember half of what the doctors tell you. Get *EVERYTHING* in writing - even all of the records from your ER visits and tests there. Throw a fit if you have to but they HAVE to give them to you. Keep track of everything - meds they put you on, tests they talk about . . . everything. Then check them all out. It was only through the power of Google that I found out I can't have my next cancer treatment for about 4 months after having a CT scan or ERCP because of the iodine. No one bothered to mention that - just one grumpy old patient and the power of the Internet.
If you find something on line (or from the doctors, etc.) don't take it as the gospel truth! Ask others who have been through it (like on the forums here) and do your research. Sometimes there are tests and procedures that are run which have nothing to do with your condition and - even worse - could aggravate another condition or prevent a necessary procedure. Check it all out. Like with the CT scan that they gave you - that can have real detrimental effects on people with compromised kidneys if contrast medium is used. It can be *very* harmful for people on the diabetes medication glucophage (which no one at the hospital asked me about last time - good thing I knew NOT to take it for a week before).
I wish I could help you more on your conditions but I just wanted to let you know that you are not alone out there! Hang in there - the MedHelp community is wonderful on getting people through the toughest of things!
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (the one with the worst case only 24-years old at diagnosis)
Thanks Utah ................appreciate it!
Here are the good basic articles that Shelly provided in the prior post:
http://www. emedicine.com/radio/topic433. htm
http://www. emedicine.com/med/topic1413. htm
http://www. emedicine.com/ped/topic1394. htm
Just make sure you take out the added spaces .. the system automatically deletes websites but these are valuable info for you and are ok to post!