Which advice would you give to someone who has just been diagnosed with Medullary Sponge Kidney?

See some advice from people with experience in Medullary Sponge Kidney to people who have just been diagnosed with Medullary Sponge Kidney


Medullary Sponge Kidney (MSK) is a rare congenital disorder that affects the kidneys. If you have recently been diagnosed with MSK, it is natural to feel overwhelmed and have many questions about your condition. While I am not a medical professional, I can offer some general advice and information that may be helpful to you.



1. Educate Yourself


Take the time to learn about MSK and understand how it affects your kidneys. Knowledge is power, and by understanding your condition, you can better manage it and make informed decisions about your health.



2. Consult with a Nephrologist


Consulting with a nephrologist (a kidney specialist) is crucial. They will be able to provide you with personalized advice and treatment options based on your specific situation. They can help monitor your kidney function, manage symptoms, and address any concerns you may have.



3. Follow a Healthy Lifestyle


Adopting a healthy lifestyle can have a positive impact on your overall well-being and kidney health. This includes:



  • Eating a balanced diet: Focus on consuming a variety of fruits, vegetables, whole grains, lean proteins, and healthy fats. Limit your intake of processed foods, sodium, and sugary drinks.

  • Staying hydrated: Drink an adequate amount of water each day, as it helps flush out toxins and maintain kidney function.

  • Avoiding smoking and excessive alcohol consumption: These habits can further damage your kidneys and overall health.

  • Engaging in regular physical activity: Consult with your healthcare provider to determine the appropriate level of exercise for you.



4. Manage Symptoms


MSK can cause various symptoms, including kidney stones, urinary tract infections, and blood in the urine. It is important to manage these symptoms effectively. Your nephrologist may recommend medications to alleviate pain, prevent stone formation, or treat infections. Follow their guidance and report any new or worsening symptoms promptly.



5. Regular Monitoring


Regular monitoring of your kidney function is essential. Your nephrologist will determine the frequency of tests, such as blood work and imaging studies, to assess your kidney health and identify any changes or complications.



6. Seek Support


Living with a chronic condition can be challenging, both physically and emotionally. Consider seeking support from friends, family, or support groups where you can connect with others who have MSK. Sharing experiences and coping strategies can provide comfort and valuable insights.



Remember, this advice is general in nature and should not replace personalized medical advice from a healthcare professional. Always consult with your nephrologist or healthcare provider for specific guidance regarding your condition.


by Diseasemaps

Do research, join an MSK group and find a good urologist and nephrologist

5/21/17 by Brooke 2100

Do not be discourage and do not google or read blogs, look up Dr Goldfarb. He is the leading researcher and doctor in the field. Follow a healthy diet and exercise regimen as well as work with your doctor for what works best for you as each patient is different.

5/24/17 by Angel 2290

Try to stay positive, drink water and find support groups and others like yourself. People tend to look at us MSK'ers and say "but you don't look sick"...

6/17/17 by SaraKay423 2170

The best advice I can give anyone that has just found out they have msk would be to go on your Facebook and search msk for any and all groups that support and can teach you about what to expect and or how to deal with any or all issues you may think could be caused mecause of this disease as it has many faces when it comes to the stages of the disease and your bodies health itself.. you will NEED!!! And I can’t stress enough the NEED of support to help you cope with the many different faces of this disease as ost people in the groups on Facebook have either been where you are with similar if not the same symptoms you are going threw right at that moment and will have large amounts of different things you can try to get you threw that emotional painful time in your every day life with msk... having that support is the #2 our ofbeverything you will need to a live with msk as #1 being drinking as much water as your able to every day for the rest of your life.

5/27/18 by Cecilia 4100

Be your own Advocate! Do not doubt your sufferings because others do not believe you. This can be a very debilitating kidney disease for some while others will have mild symptoms.

7/31/18 by Shannon Bauer 4190

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