Medullary Sponge Kidney (MSK) Patients Unite - One Voice, Several Goals
492 Comments
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Carl J Bartlett
11 years ago
I also have msk
A
Anonymous
11 years ago
Thankyou so much for you video...
A
adrienne barker
11 years ago
I also have MSK
A
Adam
11 years ago
My wife suffers from this and it is a constant battle with doctors to have her treated
A
Anonymous
11 years ago
Diagnosed with MSK 4 months ago at age 51. In hindsight the signs and symptoms have been ongoing since I was a teenager. The past 3 years my life has gone down hill with severe daily chronic pain, nausea, and exhaustion. That is not including the passing of stones. Dismissed by both GP and Urologist who stated the kidneys feel no pain except at the start of a passing stone. I have stopped asking for help as I was told my symptoms are all in my head. I have become depressed . I had 14 kidney stone attacks in 10 months and I went to the ER only twice and the second visit they waited 1 hour to give me pain medication as I was treated as a druggie looking for a fix. I don't drink or do drugs. I have lost all faith in Doctors with their refusal to look outside the box with this condition. I suffer alone and in silence. I no longer bother to see a doctor. It is humiliating to have doors shut in your face. I was perplexed by a comment made by the Urologist who stated that MSK only gets worse as time goes by... How does that matter if I don't "FEEL ANY PAIN." Makes no sense to me.
B
Brooke
11 years ago
I have MSK and it's horrible symptoms!
J
Jody Williams
11 years ago
For all of you who suffer.
M
Marissa Derrickson
11 years ago
Finding this page has seriously left me in tears and goosebumps. These tears though are happy tears because I have found others just like me who suffer every minute of every day. I have been diagnosed with this horrible disease since 2008 when I was pregnant with my last child. I have had numerous ER visits, multiple hospitalizations, numerous ct scans, ultrasounds, lithotripsy. And the doctors here in my town on the east coast of Florida love to accuse right away of being a narcotic drug seeker. It's awful. I feel horrible and sometimes the pain is so excruciating that it causes me to have severe nausea and vomiting and I can't keep down my oral pain and nausea meds I have at home so I have to make trips to my local emergency room for iv fluids pain and nausea medication. I have been denied any medication multiple times and been accused of being a drug seeker. This disease is robbing me of any quality of normal day to day living. I have 3 children whom of which have been witnesses to it all. To finally read and find others who suffer the same as me is a god send. These doctors make me feel as, though I am loosing my mind and some have even consulted psychiatric doctors to evaluate my mental state. Please know that I will continue to fight for all of us MSK patients.
M
Marissa Derrickson
11 years ago
Finding this page has seriously left me in tears and goosebumps. These tears though are happy tears because I have found others just like me who suffer every minute of every day. I have been diagnosed with this horrible disease since 2008 when I was pregnant with my last child. I have had numerous ER visits, multiple hospitalizations, numerous ct scans, ultrasounds, lithotripsy. And the doctors here in my town on the east coast of Florida love to accuse right away of being a narcotic drug seeker. It's awful. I feel horrible and sometimes the pain is so excruciating that it causes me to have severe nausea and vomiting and I can't keep down my oral pain and nausea meds I have at home so I have to make trips to my local emergency room for iv fluids pain and nausea medication. I have been denied any medication multiple times and been accused of being a drug seeker. This disease is robbing me of any quality of normal day to day living. I have 3 children whom of which have been witnesses to it all. To finally read and find others who suffer the same as me is a god send. These doctors make me feel as, though I am loosing my mind and some have even consulted psychiatric doctors to evaluate my mental state. Please know that I will continue to fight for all of us MSK patients.
C
Christian Cook
11 years ago
ello my name is Christian I'm 23 I'll be 24 on June 19 2015 and I have msk I have had the pain since I was around 14 years old I did not know anything about this I always told my fad that I had pain in my lower back on my right side he lway told me it was growing pain it had effected me all the time everyday and still dose today it has calasped me at school work other places it would come and go and one day I just could not take it anymore so I went to the er and they told me I had kidney stones and I live in Colorado springs and after going a few times they had told me I have msk and referred me too a urologist and I never went I've been to the ER as lot more but I just don't have the money for the urologist to go see them I really need help but don't know what to do it makes allot of things hard to do I just got a job and I have only been there three days and I have collapsed at least 4 times because of the pain
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Deanna Smith
11 years ago
Diagnosed at @ 22. I have had chronic pain since I was 13 when I received my first surgery.
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Angela Holloway
11 years ago
i have recently been diagnosed as of yesturday..had a ct urogram for hematuria . i have been suffering the chronic pain and had passing of stones before ..i am 41 and this is very concerning for me...also as for hereditary reasons i sign this petition bcus my son has had his first bought of kidney stones two years ago...this is real and many others in my family i believe have this...so much research is needed...
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Rhonda Vela
11 years ago
Signing in support of my daughter-in-law.
T
Toni zobel
11 years ago
My 28 yr old daughter suffers from this desease. I am signing this petition to support her and this cause
H
Heather
11 years ago
The medical community needs more education on this disease, not only for those diagnosed and suffering, but also for those who are giving up hope, enduring test after test, but receiving no answers...all because their physician is unaware of MSK and its very challenging (and, potentially, life-threatening) symptoms.
K
Kathryn Christmas
11 years ago
Stage 3 MSK diagnosed 3 years ago.
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Anonymous
11 years ago
I support this cause.
R
robin fletcher
11 years ago
My step daughter suffers from this our family prays everyday they will soon find a cure!!
L
Laura Beyer RN, MSN
11 years ago
I have MSK and have benn suffering from daily chronic flank pain for seven years, (two years after my first kidney stone at the age of 31) even when I do not have a stone moving.
C
Carolyn Butler
11 years ago
My daugter has suffered with msk for over 4 years and has generally been treated horribly by the medical professionals. She has been labelled a drug seeker amd has been refused treatment a number of times. Please let me know if there is anything else I can do to help you.
I also have msk
Thankyou so much for you video...
I also have MSK
My wife suffers from this and it is a constant battle with doctors to have her treated
Diagnosed with MSK 4 months ago at age 51. In hindsight the signs and symptoms have been ongoing since I was a teenager. The past 3 years my life has gone down hill with severe daily chronic pain, nausea, and exhaustion. That is not including the passing of stones. Dismissed by both GP and Urologist who stated the kidneys feel no pain except at the start of a passing stone. I have stopped asking for help as I was told my symptoms are all in my head. I have become depressed . I had 14 kidney stone attacks in 10 months and I went to the ER only twice and the second visit they waited 1 hour to give me pain medication as I was treated as a druggie looking for a fix. I don't drink or do drugs. I have lost all faith in Doctors with their refusal to look outside the box with this condition. I suffer alone and in silence. I no longer bother to see a doctor. It is humiliating to have doors shut in your face. I was perplexed by a comment made by the Urologist who stated that MSK only gets worse as time goes by... How does that matter if I don't "FEEL ANY PAIN." Makes no sense to me.
I have MSK and it's horrible symptoms!
For all of you who suffer.
Finding this page has seriously left me in tears and goosebumps. These tears though are happy tears because I have found others just like me who suffer every minute of every day. I have been diagnosed with this horrible disease since 2008 when I was pregnant with my last child. I have had numerous ER visits, multiple hospitalizations, numerous ct scans, ultrasounds, lithotripsy. And the doctors here in my town on the east coast of Florida love to accuse right away of being a narcotic drug seeker. It's awful. I feel horrible and sometimes the pain is so excruciating that it causes me to have severe nausea and vomiting and I can't keep down my oral pain and nausea meds I have at home so I have to make trips to my local emergency room for iv fluids pain and nausea medication. I have been denied any medication multiple times and been accused of being a drug seeker. This disease is robbing me of any quality of normal day to day living. I have 3 children whom of which have been witnesses to it all. To finally read and find others who suffer the same as me is a god send. These doctors make me feel as, though I am loosing my mind and some have even consulted psychiatric doctors to evaluate my mental state. Please know that I will continue to fight for all of us MSK patients.
Finding this page has seriously left me in tears and goosebumps. These tears though are happy tears because I have found others just like me who suffer every minute of every day. I have been diagnosed with this horrible disease since 2008 when I was pregnant with my last child. I have had numerous ER visits, multiple hospitalizations, numerous ct scans, ultrasounds, lithotripsy. And the doctors here in my town on the east coast of Florida love to accuse right away of being a narcotic drug seeker. It's awful. I feel horrible and sometimes the pain is so excruciating that it causes me to have severe nausea and vomiting and I can't keep down my oral pain and nausea meds I have at home so I have to make trips to my local emergency room for iv fluids pain and nausea medication. I have been denied any medication multiple times and been accused of being a drug seeker. This disease is robbing me of any quality of normal day to day living. I have 3 children whom of which have been witnesses to it all. To finally read and find others who suffer the same as me is a god send. These doctors make me feel as, though I am loosing my mind and some have even consulted psychiatric doctors to evaluate my mental state. Please know that I will continue to fight for all of us MSK patients.
ello my name is Christian I'm 23 I'll be 24 on June 19 2015 and I have msk I have had the pain since I was around 14 years old I did not know anything about this I always told my fad that I had pain in my lower back on my right side he lway told me it was growing pain it had effected me all the time everyday and still dose today it has calasped me at school work other places it would come and go and one day I just could not take it anymore so I went to the er and they told me I had kidney stones and I live in Colorado springs and after going a few times they had told me I have msk and referred me too a urologist and I never went I've been to the ER as lot more but I just don't have the money for the urologist to go see them I really need help but don't know what to do it makes allot of things hard to do I just got a job and I have only been there three days and I have collapsed at least 4 times because of the pain
Diagnosed at @ 22. I have had chronic pain since I was 13 when I received my first surgery.
i have recently been diagnosed as of yesturday..had a ct urogram for hematuria . i have been suffering the chronic pain and had passing of stones before ..i am 41 and this is very concerning for me...also as for hereditary reasons i sign this petition bcus my son has had his first bought of kidney stones two years ago...this is real and many others in my family i believe have this...so much research is needed...
Signing in support of my daughter-in-law.
My 28 yr old daughter suffers from this desease. I am signing this petition to support her and this cause
The medical community needs more education on this disease, not only for those diagnosed and suffering, but also for those who are giving up hope, enduring test after test, but receiving no answers...all because their physician is unaware of MSK and its very challenging (and, potentially, life-threatening) symptoms.
Stage 3 MSK diagnosed 3 years ago.
I support this cause.
My step daughter suffers from this our family prays everyday they will soon find a cure!!
I have MSK and have benn suffering from daily chronic flank pain for seven years, (two years after my first kidney stone at the age of 31) even when I do not have a stone moving.
My daugter has suffered with msk for over 4 years and has generally been treated horribly by the medical professionals. She has been labelled a drug seeker amd has been refused treatment a number of times. Please let me know if there is anything else I can do to help you.