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Avatar universal

A few questions that I have.

  Hi.  I was dx'd with MSK about 4 years ago.  From there I was put
   on K-Phos Neutral and a diet minus all meats, and added dairy.  
  Here is one of my questions:  Could you please explain to me the
  difference between MSK and PCK.  
  My last ultrasound shows cysts on one of my kidneys.  And the
  IVP (as does the regular xrays) shows 2 stones in a pocket in the
  same kidney.  
  Second question:  It is my understanding that one can have MSK
  and PCK at the same time?
  When I lived in Dallas, I had gone to an allergist.  Two of the
  things he said I had reactions and was allergic to are:
  Vitamin C and Potassium.
  When I told my doctor this, he said it is imposible for people to
  be allergic to these things since they are vital for the body
  to function.  However, since I have stones I stay away
   from the vitamin C type of products (for those who are unaware
  large amounts of Vitamin C can cause kidney stones).  But here
  is the problem:
      I began taking K-Phos Neutral a few years ago.  Since then
  I began having dizzy spells, I have had my feet and ankles swell
  close to the size of my calves (am now on maxide due to this),
  I have hurrendious hands and feet cramps, and I am also losing
  my hair (for a woman I think this is a little more devistating
  than what it is to for men.)  I have gained weight, more than
  I care to admit.
  I also am so very tired, worse than that. There are times I am so
  exhausted that when I have stood up and walked from my chair to
   my bed (desk is 3 feet away from my bed) that I have been up for
   2 weeks and just finished running a marathon (no I am not having
   breathing difficulty I am still speaking of the tremendous
  exhaustion).  If my eyes tear up they tears burn my eyes so bad.
    When I wake up in the morning I cannot rub my eyes because the
   oil on my eyelids burn my eyes.  I never sweat, unless the
  temp is in high 90s or better (this is not an overstatement).
  Sometimes I have such incredible flank pain, and lower abdominal
  pain (scar tissue is what this are of pain is explain as).  My
  doctor says I should not be having this type of pain.
  Worse of all, and I know you will say I need to drink more
  liquids (I do) ... I have to force myself to drink what liquids
  I drink, which is about 1 liter of either water, coffee, or,
  diet coke within a 2 day period.  Maybe once every 4 days I am
  actually thirsty enough to drink a liter.
  I have spoken to my doctor about having some of these symptoms
  concerning K-Phos Neutral (at the time I did not know these were
   side effects) and his comment was, "I don't know what can be
  causing this, it shouldn't be happening since you take K- Phos."
  Is there anything at all I should know (other than I should
  drink more liquids)?  And is there any other medicine that can
  be given for MSK than the K-Phos (as I have recently found out
  that some of these things I have discribed are actually side
   effects from this medicine)?
  Sorry for this being so long, I would be happy to take any
  comments to the attention of my doctor, as he just may not be
  aware of something you may be aware of.  I do have an
  appointment on the 17th of March for bloodwork concerning so
  of which I have written about.
  Thanks you in advance ...
  l'Dusty D Bunny
1 Responses
Avatar universal

Dear Dusty Bunny,
Thanks for your questions
MSK - medullary sponge kidney is a condition of the kidney in which the terminal tubules dilate and become abnormally large. This condition predisposes one to stone formation.  PCK- polycystic kidney diseases ( autosomal dominant / recessive) are  hereditary conditions in which cystic cavities form in the kidney.  Acquired cystic disease occurs in patient who have renal failure.  A few simple cyst in the kidneys after age forty  is common in normal people.    The mechanism of cyst formation  is unknown but believed to be an obstructive process on the nephron level.  
A metabolic work-up (24 hour urine tests and a blood tests )  off the K-phos would be  a way to diagnosis a particular abnormality  in the urine causing stone formation.  This would help determine an appropriate medication/  dietary restrictions to help in stone prevention.
Your constitutional symptoms (tiredness, etc.) are not obviously related to what you describe and  though quite possibly emotional in cause need to be evaluated fully. Sometimes a fresh mind (second opinion) can be valuable.
More individualized care is available at the Henry Ford Hospital and its urban campuses by calling  (1 800 653 6568). We can also arrange local accommodations through this number if this is your need. Please bring any physicians
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