Medullary Sponge Kidney Disease (MSK) Community
Need Dr in Seattle with MSK experience
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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Need Dr in Seattle with MSK experience

I am in need of finding a dr in the Seattle area who has experience dealing with MSK. In the past few months I've had many stones pass and had 2 EWSL treatments for large stones that were stuck.The dr I dealt with then continously said "I don't think you have a stone" even when there was a stone in the uretor and I had hyrdo!  Was in the ER a month ago because of terrible pain that has not gone away. Trying a new Urologist office (couldn't stomach going back to the first). I am also having: blood in my urine, nausea, chills/sweats, and fatigue. No big stones blocking, so like so many other here have said, am getting response from the dr "we don't know why your having pain. there is no stone blocking...". I did do a course of Cipro, which helped, but not completly. Am starting my second round of antibotic (antibiotic) now. The dr reluctantly gave me a small script for some pain meds, but doesn't want to perscribe since "there is no explanation for pain"...

I am hoping to find someone in the area who is more familiar with MSK, and has ideas on how to treat a patient with the condition, as I am feeling that this office has not. Note: to-date, I have only met with the nurse practioner, who consults with the dr.

It has been such a relief to read others stories here. I really have felt like a head-case, and was beginning to wonder what was wrong with me...
Kari
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3 Comments Post a Comment
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489228_tn?1291535054
Kari,

    Welcome!!  You have found the right place, you are among friends
here and also others who like you struggle with MSK!  Together we are also seeking and have found some solutions for dealing with the kidney pain and MSK!  ttle

   There is nothing wrong with you and I am so sorry I did not see your post
till now.  What you describe are actually the classic symptoms I hear from most
MSK patients I talked, i would say in the 100's by now.

Though I do not know of a doctor in Seattle I can send you some articles and
info to take with you to your doctor.  Just pm me your e-mail address, since
several are odf articles etc. and I will send them to you!

Hang in there, and I am sorry your have been through so much.. but also that your post got through the holiday cracks!

Shelly



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I was so hoping to find a doctor's name also! We live in Wenatchee, and there is definitely no doctor here to deal with this so was hoping Seattle would be the answer. My 19 YO daughter was diagnosed with MSK a few weeks ago and has been in constant pain for several months (and intermittent pain for 1 year prior). It breaks my heart to not know how to help her, to get her some relief from her pain. It has changed her life, going from a collegiate athlete (volleyball team) to dropping out of school because she is in too much pain to go anywhere, even to classes. We would appreciate any information you could send us.
Thanks, Tonya
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489228_tn?1291535054
Tonya, I would be glad to call and talk to you. I am sorry to hear all your daugher is going through.   I wish I could give you name but the truth is that no one is doing the research that we have together here.  I personally have spent countless hours and intense time researching MSK and chronic pain, and treatment options.
I have research articles etc. that can help you but these are pdf articles that I can not post here, since we do have permission to do so.  I do have permission to share them with patients for their own treatment.

below is one article I posted here on MEDHELP about treatment protocol we have found helpful.  if you would like to talk by phone I can explain so much better and quicker.  I have personally spoken with patients around the world like your daughter and do have info that can help her get the treatment she needs.  Sadly we do have to be our own advocate.  I am glad your daughter has you..., few doctors are trained in this area.  You can send me message with your number and e-mail address and I would be glad to help you all I can.
Sorry we don't have many doctors claiming to specialize in this, but any doctor willing to learn and really look at the info. is a great doctor  to have.  Thankfully more and more patients are finding them though.....

http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185

Hopefully we can talk soon!

Shelly
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