Medullary Sponge Kidney Disease (MSK) Community
Please Reply!!!
About This Community:

This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Please Reply!!!

PLEASE REPLY!!!!
I am new to this forum.  I have MSK and have Kidney stones all the time.  I have two small children, am in school, and live on farm with lots of animals. My life comes to a complete halt when I have these stones and with the general pain associated with this disease.  I have read s lot about it and from what I understand there is no cure, just treating the pain and stones.  Could someone please give me some advice on how to deal.  The DOCTORS, sho are suppose to be there to learn, research and want to help, automatically give up on something that does not have a quick fix.  I am so frustrated and I wish I could become a doctor, because I know the kind of doctor I would be.  The kind that when challenged, will not give up until I find help for the person who needs it.  I have had a lot of adversity, as does everyone, but this is a never ending battle.  I NEVER give up on anything I want or want to achieve, and usually succeed in what I do without asking for help.  However, this is something that I cannot beat by myself, I do not want to give up.  I want to play with my children, I want to ride our horses, I want to teach my girls how to ride. I want to finish school with straight A's. I want to take care of all of our animals on the farm. I want to hunt and fish and work with my sweet and deserving husband! This diseaseis preventing me from all of these and I am so frustrated with it and the pain that I do not know where to turn for help and advice.  If anyone can help, with advice, doctors or information, PLEASE REPLY!!!!  Thank you all and I pray for all of you all of the time.  
Related Discussions
8 Comments Post a Comment
Blank
1459926_tn?1285727609
My husband is dealing with MSK as well. And as far as doctors go, I gave up 2 years ago on my condition. I have had digestive problems now for 3 years. I had always had bouts of diarreah (diarrhea), constipation, ulcers, puking, bloody stool, and anything I would eat would be digested within 5 to 8 hours instead of the normal 24 hours. They did so many tests on me I was used up. And all they could tell me is that they didn't know. They figured either chron's disease or ulcerative colitis. I gave up when they did. My husband is in the Navy and is about to be deployed, and after years of dealing with stones, they discovered the cysts on both his kidneys. Now he is dealing with the Navy on the possiblity of staying or going. The doctors told him that all he can do is diet. Drink 3 to 4 liters of water a day, enough to produce 2 liters of urine a day. Stay away from excess amounts of salt. Citrus helps, like orange juice, or lemon in your water. Only drink water! Better to stay away from processed foods/ fast foods, try to eat organic. Get tons of Vitamin C.  Stay active. As far as pain goes, trying a hot bath, no soap, or a heating pad, as your doctor about muscle relaxers, they work better than pain meds do, especially since it is internal pain. There really is not much to do, but every little bit helps. I am sorry you are going through this, I wish you the best. I wish I knew more myself, I am afraid I am not much help. When it came to myself, I had to turn to my own remedies. Everyone is different, so you may have to figure out what is best for your body. I have a son as well, and use to be a single mom, so when my digestive problems came about, I couldn't afford to take a day from work or home. It's a struggle dealing with disease that have no cure. But there is always hope. Never let the disease win, never let it control your life. I hope this has helped somewhat. All my love and best wishes!
Blank
1459926_tn?1285727609
I meant Vitamin D, Im sorry, but don't over do it, ask your doctor about that. If you have a crap doctor like I had, or my husband, then I would switch. If you can't switch, then straighten him/her up! Tell the doctor you need help, not someone to sit there and shrug their shoulders. Don't be afraid to ask questions, make them work! They are there to help it's their job! Stick up for yourself! Best wishes.
Blank
Avatar_f_tn
Hello,  You have come to the right place.  Most of us with MSK feel the exact same way you do.  There are some remedies that can help with the pain, Vitamin D, increase fluids etc, but unfortuanately that does not work for amny of us.  I am now at the point that I have to get something done.  I am going to Michigan to see Dr. Wolf to see if he will perform a procedure on me where they laser the stones on the outer part of the kidneys.  I know it may only provide some relief for a few years, but at this point I would take 2 weeks without pain.  It is frustrating dealing with some doctors as they do not seem to know enough about this, and I get the "well, this disease is not fatal"....like that means I should just go home and deal with it.  But we can not deal with it.  When I am in pain every day I can not play with my kids, it is affecting my work, then I go on pain meds for the pain and I am so tired, and I keep getting warned from doctors that I will get addidicted to the pain meds-but do I not take anything and cry in pain all the time?  Hang in there-and keep reaching out to people on this forum-I have found this very helpful just to know that there are other people who feel like this.  
Blank
489228_tn?1291535054
HI AND WELCOME!  You have definately come to the right place, a place where you will find many just like you who battle this chronic unexplained pain that comes with all our stones.  Please read through, the past post.  Go to the healthpages on the top right hand of this page.  Then please feel free to pm me for some info and articles.  If you live in the US I can call you, which makes explaination 20x easier.

RaelovesJustin there is hope and there are treatments we have found at least give back some of our quality of life and relief that maybe only months or years then we have to try again, but we can get there.. Toomanystones.  I am glad you maybe going to Dr. Wolf.

Have you tried a long dose of antibiotics first?  The reason I ask is that many are able to buy time with the antibiotics etc. and if you do have the procedure by Dr. Wolf having a doctor follow up with a good long strong dose of antibiotics seems to have increased both
the relief of pain and the length of time the pain improves.  PLEASE keep me posted on how things are going?

Shelly
Blank
Avatar_f_tn
Hi there I have also just joined and just had to comment as I felt reading your post it was actually me who was talking! I too live on a farm with two young children and know exactly how you feel.My partner works in a distillery and works really long shifts and sometimes I feel I do not have to strength to get through the day and do not get the benefit of my beautiful surroundings etc.(I live in scotland on the island of islay)because I am cooped up most of the time with my constant companion my hot water bottle .It would be great to keep in touch even if it is just someone to let off steam to who is in the same boat.  
Blank
489228_tn?1291535054
Welcome on this board and I am sorry I did not see your post till know!
You are among friends here and you can vent, cry and most of learn ways to keep
the pain levels down!  

Shelly
Blank
Avatar_f_tn
Boy can i relate!  i just found this board tonight and am excited to read more and more about this disease.  I've been battling it for over 7 years now, having just had my 28th surgery a few days ago.  The stones are never ending.  I'm having surgery every other month it seems.  the pain can be unbearable.  and even though i know my husband loves me, i sometimes just feel worthless because I didn't have this when we got married 16 years ago and there are just times when all i feel like doing is crumbling to the ground and crying.  medications, surgeries, and pathetic looks from co-workers asking why can't they just fix this for you?... it all gets to be too much somedays.  I'm hoping to learn more from others and be able to share my experiences and expertise as a chronic stone former.  Let's hang in there together!
Blank
688135_tn?1290783376
YOu sound exactly like me~and many of us.  
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Medullary Sponge Kidney Disease (MSK) Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
9 hrs ago by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
This is Driving Your Emotional Eati...
Jul 02 by Roger Gould, M.D.Blank
5856747_tn?1403352282
Blank
Sleep Apnoea
Jun 28 by Andrew John Rynne, MDBlank
Top Digestive Answerers
168348_tn?1379360675
Blank
ChitChatNine