MSK

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My story is entirely to long to write here on this site.  I have had issues since I was a very young child.  At 15 my blood pressure was chronicly high.  By 17 I was in severe pain and made many trips to the ER for pain that was unable to be pinpointed in my back and abdomen, and bladder.  I've had chronic uti and kidney infections all my life.  By 18 I learned I was loaded with stones in my kidneys.  I then started seeing a nephrologist and urologist and was diagnosed with MSK.  Since then, I've struggled with the same things and it has affected my ability to hold a job and work, also to live a normal life. So far, I am the only person in the state of Delaware to have this rare disease on this site.  I also have another rarity, I have double arteries to my kidneys.  Only 20% of the worlds population has this. 

I am aware I am different, I struggle with this disease that is down played.  My urologist is very understanding and has said to me he is aware and apologizes for this "life sentence". 

I know it could be so much worse, but MSK is bad.  I have many other conditions that tie into it.  Including, I have had gone into renal two failure, I've had 10+ mm stones, I've had many lithotripsies, uretoroscopies, stints, cystoscopes and so many Ct scans I am not allowed to have anymore unless their is no other options. 

Ive been treated very bad and once in a while very well by physicians.  I do not wish this on anyone. 

 

If i I can be of help to anyone, please feel free to contact me.