Medullary Sponge Kidney Online Project

Things You Need To Know About CT Scans

I just had a most disturbing chat about the excessive use of CT scans with a MSK patient I am going to call “Athena“.

I wanted u to know I’ve been diagnosed with leiomyosarcoma …

Which they think could have been caused the high doses of repeated radiation from CT scans.

Leiomyosarcoma (I learned from my friend Google) is a fast spreading cancer and with a 63% survival rate for stage 1. Athena will be having part of her uterus removed to try and stop it’s spread. There is also a “dark spot” on her liver that doctors are concerned about.
The dangers of CT scans are not well understood by most people and  MSK patients need to be extra aware of the dangers because of the prevalence of over use in the detection of kidney stones… and so, the chat quickly turned into more of an interview:
La Velle: How old are you?
Athena: “27”
La Velle: “Could you estimate how many CT scans and x rays you have had in your lifetime?
Athena: “I’ve had about 200 X-rays n about 150 cat scans or more.”
La Velle: “What was usually the reason they would do a CT scan?”
Athena: “To check for stones n the size. Anytime I go to the hospital they don’t want to help me in anyway unless I get a cat-scan because that’s their best way to determine stones.”

This is not the first time I have heard about CT scans, in the States, being performed over and over with little regard for the damage being done. This is interesting to me, because I live in Canada, where doctors don’t typically subject patients to that much radiation by the time they’re 27 years old… and our medical standards are on par with the USA. So, why the frightening over use in the USA?

La Velle:After they would confirm a stone and the size, how did it change the treatment they would give you?”
Athena: “They usually will ship me by ambulance 4 hours away saying they ‘don’t have the technology’. Or ‘the doctors there will be better for me’. Or they’d give me a dose of Dilaudid n send me home with Tramadol.”
La Velle: “Is your understanding that they were using the CT scans and X-rays to make sure that you actually needed pain meds? Or do you think that they were really necessary to be sure of what treatment would be best?”
Athena: “To make sure I needed pain meds. . The evidence from ultrasounds let them know I had stones, hydronephrosis, or enlarged kidney plus bloody urine; But they’d still insist on cat-scans.”
According to my nephrologist, Athena is not wrong about that – Ultrasounds along with the patient’s symptoms and urine tests will give a doctor a pretty good idea of what is going on with a patient’s urinary tract without subjecting them to the radiation of CT (the radiation of a CT is much higher than normal X-rays).
La Velle: “This is infuriating.”
Athena: “I know, but if I didn’t do what they wanted I wouldn’t get treatment. Last time I refused they waited 5 weeks with a 3 stone blockage in my kidney before they would even put a stent in and that’s because I refused a ct. They just gave me meds n a strainer n told me to wait til I pass it.”
Athena, you see, had been subjected to so many CT scans and X-rays in the past that radiologists had told her doctors “absolutely no more cat scans unless it’s life or death.”
Athena: “But they still ordered them n every time I refused I got treated like a druggie.”
Feeling the need to ‘defend’ herself from further CT scans, she refused to have another one done after an Ultrasound and KUB revealed the 3 stones blocking. She felt that was sufficient information to warrant a stent with no further testing and that is what she asked the doctors to do for her.  The doctors claimed however, that they first needed a CT scan ‘to determine if the stones were small enough for her to pass them on her own’ or whether she might need surgery. After Athena refused the CT scan, the same doctors sent her home claiming they were confident that she would pass them fine on her own with Flomax and increased fluids. The stent was refused.
Some might argue that the CT scan Athena refused was one she actually needed given that she had a blockage. Maybe. Maybe not. None the less, her sense that she needed to avoid the CT should have been understood given her circumstances. She has the right to self determination. She has the right to accept or refuse any medical treatment and exercising that right should in no way change the doctor’s objective and obligation to provide the best possible medical care.
 After being sent home that day, Athena sat on that blockage for 5 weeks. The situation reached critical mass when she found herself in so much pain, and her blood pressure so high, she suffered a mini stroke. She was admitted to hospital, and a CT scan was done at that point because, as she put it “it was either that or die.”
So what difference did the CT scan make in her treatment? In the end, they did exactly what she had asked for in the first place. They put in a stent in order to help the stones pass. After another month, surgery was performed to remove the blocking stones. Clearly, the stent could have been put in place from the beginning, even without a CT scan and, if after a month they had not passed, surgery could have been scheduled. So the CT scan that the hospital insisted on really appears to have been unnecessary.
If Athena were a patient with no history of stones or someone who didn’t have MSK, it might make sense for doctors to insist on a CT scan before treating her, but her painful history is well documented. There is a long history of frequent stones as well as CT scans and surely, a sense of how big the stones likely were could have been extrapolated from that.
In a manner of speaking,  Athena’s medical treatment was held for ransom. The question is, why?
For lack of any reasonable excuses, it appears hospital staff took her refusal of a CT scan as license to deny her treatment for what they knew was a blockage, placing her at increased risk of more serious medical issues.
My outrage over this girls’ treatment is partly due to the difference between the treatment we each receive (me in Canada and her in the States) because it appears to makes no sense unless you look at the non-medical aspects of the problem.
Here in Canada doctors make limited use of CT scans and X-rays in their treatment of kidney stones. The reason is that ultimately, the damage caused by radiation does not justify what they actually learn from the scans and while Ultrasound is not as clear cut- between the patient’s symptoms an Ultrasound and urinalysis, doctors can get a very good idea of what is happening with a patient without exposing them to harmful radiation. Certainly it is a good enough picture to make decisions about how to move forward with treatment in the case of a blockage. Further, little known is the fact that CT scans routinely miss kidney stones all together and in those cases, treatment waits until the situation becomes more critical anyway.
Why is this approach so different from doctors in the US? Athena and many other MSK patients in the USA have indicated to me that they are often given CT scans as soon as they complain of abdominal or flank pain. (Which is how Athena wound up having had so many by the age of 27.)
There are several things that appear to be driving the differences in treatment.
First and foremost, on both sides of the border, is money.
In Canada, doctors are discouraged from using expensive tests and scans frivolously.  The reason for that is that our healthcare system is universal. We pay a healthy tax premium for that privilege. But to maintain the sustainability of the system, doctors can’t be subjecting every case of abdominal or flank pain to CT scans and X-rays. So they think more carefully about when these tests are really necessary and use them accordingly. Canadian doctors offices and hospitals are also not run as for profit businesses, giving them incentive to order unnecessary scans.
In the USA, the medical system is set up as a for profit industry. Doctors are paid more and hospitals charge more for each test and scan they send you for. Costs are inflated such that the average bill for hospital stays, testing, etc. is 3-4 times higher in the States than if a US citizen were to come to Canada and pay out of pocket for the very same services. So doctors in the States have a vested interest in making sure they are giving you every test and scan they can in the treatment of your disease. There is an incentive to “up-sell” as it were.
The next culprit is the “war on drugs.” In Canada, we have drug addicted people just like in the States. And, we have people who are responsible to make sure doctors are not abusing their authority to prescribe narcotics however, they are not actively encouraging hysteria over the narcotics that are legitimately prescribed to patients who need it to treat chronic pain and there is no “war on drugs” propaganda being piped through the media.That whole thing is creating twisted misconceptions about the use of narcotic pain medication such that patients who are “dependent” on narcotic pain medication (meaning, their medical condition genuinely requires narcotic pain medication in order for them to function from day to day) are erroneously labeled “addicts” (which is actually what a person who doesn’t have a condition that requires narcotic pain medication is when they can’t get through a day without narcotics.)
In the USA, the DEA and its policies are pushing doctors to ignore their medical training in an effort to avoid losing their medical licenses which forces them to act in ways that are contrary to the best interest of their patients. DEA agents are not doctors and thus have no medical expertise to know if a patient genuinely needs narcotic medications- yet they are ultimately the ones who are driving these bad medical decisions in many cases.  So some doctors are using CT scans as a tool to prove they are not giving drug seekers narcotic scripts instead of using CT scans to properly diagnose and treat disease.
Furthering what I think can be accurately called “narcotic hysteria” is that there truly are drug seekers who try to fake kidney stones (and other painful ailments) in their efforts to get doctors to feed their addictions. Doctors are in a position that compels them to do what is reasonable to avoid giving seekers narcotics. For their own peace of mind, CT scans are (unreasonably) being used as a tool to filter out the addicts- to the medical detriment of legitimate patients.
This approach is giving some patients the false impression that CT scans are an important part of the process whenever they have a sudden sharp pain. A doctor’s failure to send those patients for CT scans is perceived as a failure to provide proper treatment when nothing could be further from the truth.
In my opinion a doctor who refuses to give a patient a CT scan for the purpose of ‘finding out if their pain is being caused by a stone’ is probably a pretty good doctor- because he/she is choosing what is in the best interest of the patient over personal gain. When a doctor is willing to do that, even in the face of a patient who is pushing for the CT scan, it suggests he or she has some integrity and genuine concern for the patient’s health and well being.
If you have MSK and you have pain that feels like a stone, it probably is. There is no need to subject yourself to radiation to know for sure. Knowing will not make the stone less painful when it passes. In a lot of cases, the CT scan makes zero difference in how your treatment will be carried out.
Bottom line is this: The radiation from CT scans is dangerous. There is no “safe” radiation. The more you are exposed, the higher your risk for cancer in the future. So it is smart to reserve CT scans for the times when they are really necessary. Before agreeing to have one, ask lots of questions about the reasons for the scan, how it will change your treatment if you have the scan and if you don’t. Ask about what will happen if the scan misses the stone. Ask what the CT is going to provide over Ultrasound, urine tests and symptom analysis and ask the doctor to explain why that is sufficient reason to expose you to the high radiation levels of a CT scan. Avoid doctors that use them as a screening tool for addicts and try to surround yourself with doctors that won’t subject you to high levels of radiation needlessly.
I think it is wise to think of each CT scan, KUB and X-ray as steps toward a cancer diagnosis and to utilize them accordingly.

The Faces of Pain by Bonnie Neville Rossi

As I peruse the photos that are currently posted [in our MSK group], I mentally note that not one appears to be face of drug addiction which ER personnel often so readily paint on us the moment they view us in helpless, uncontrollable, merciless pain. I also mentally note that neither does one appear to be the face of pain. This too causes us additional stress, additional pain from that stress, and additional time spent in pain due to ER personnel assumptions, and often assumptions from the physicians we seek for help and knowledge. We are not a rare breed in that we suffer incredible pain, often long-term pain, and often demobilizing, or debilitating chronic colic in our kidneys which without medicinal, or surgical, or both assistance, can lead us to the door of depression at times. Certainly there are people whom live with,or have lived through far worse than we- terminal cancer, ptsd, loss of a child, diseases even more rare than ours whom put on the happy mask and say “o I’m okay, how are you” while no one would guess the “I hurt so bad” singular conversation going on in their heads at the same time. But the remarkable thing about us is, there seems to be no acceptable MSK or dRTA “model” which the medical community will use for us and so through their ignorance, it seems to be easy for them to paint us quite readily as their “model” for their own objective biases and discrimination as opposed to witnessing, and listening to the subjectiveness of the patient. I wonder in simple terms…when did the voice of horrendous pain become the model for drug seekers or drug addiction anyhow? When did the voice of tremendous pain become the very REASON ER personnel will often DENY good help to a patient. We often try to get to help before we are at the begging for mercy point when we know our pain is getting progressively worse. In turn for doing the wisest thing while we uncontrollably grit our teeth and ugh, we are told “you don’t look like you’re in much pain” therefore we must be just “seeking drugs”. And so we are ignored until we are finally crawling floors and climbing walls begging for mercy. It is then that we are told, “you weren’t like this when you came in” therefore we must just be “seeking drugs”. If we don’t get to the ER before we are climbing walls begging for mercy, we are definitely just “seeking drugs”because surely crazed uncontrollable pain is the model of a “drug addict”.

Would You Rather Pass A Kidney Stone Or Give Birth? – Guest Blogger Ashley Hawkes

I’ve birthed 3 children. I’ve birthed upwards of 50 medium-large kidney stones and I urinate gravel weekly. I’ve also birthed kidney stones while birthing a child. (Yep, no joke. shoot me.)

I am asked the question often;
“Which is worse; childbirth or a kidney stone?”

After much thought, I finally have my answer:
Childbirth gives you the option of an epidural. Childbirth gets several nurses by your side feeding you Popsicles and so tenderly catching your vomit in a pink basin. Your body goes into nesting mode. 9 months to prepare yourself emotionally, mentally and physically for the labor ahead. People shower you with gifts. You get a prize after you labor, and you get to take it home and snuggle it. Everybody wants to hold it and oooh and ahhhh over it.
But with a kidney stone… everybody just blankly stares at you while you shout like a sailor and vehemently try to get as naked as possible because having ANYTHING touching your skin is excruciating. And when you BEG for an epidural they chuckle while they smack you in the kidney with their fist while asking if that’s where it hurts. There is no advance warning. You’re stirring a pot of something over the stove or driving down the freeway when it suddenly hits you like an oncoming train. And after days or weeks, when you’re finally done writhing and begging your spouse to dig your kidney out with a wooden spoon and you hear that golden nugget hit that porcelain commode, you’ll have to fish it out with your favorite salad tongs or your spouse’s best nose hair tweezers. (sorry honey!) There will be no doctor sitting there ready to catch it. You’re on your own. And then, after all that hard work, blood, sweat and tears, you are left with a tiny, smelly rock. And nobody wants to snuggle it, let alone look at it. Trust me, I’ve offered. You could name it, but then again you wouldn’t want to get attached. Or re-attached.
The point is, kidney stones are worse. For me anyways.
Babies are just…better.

Talking With Doctors About Pain and MSK

Has it happened to you? Have you struggled to make your doctor understand? Have you stumbled on your words and started to shake as you sensed his disbelief and then started talking like a crazy person?

It isn’t’ just you. It seems to be the endless plight of many symptomatic MSK patients. Many go to their doctors, explain that their MSK is causing them pain. It is chronic. They need help managing the pain. “It isn’t just me! There are hundreds of MSK patients just like me on Facebook!“. The doctor rolls his eyes and explains to the patient “MSK doesn’t cause pain unless there is a stone on the move or there is a blockage.” The patient starts becoming visibly upset, struggles to explain in a way that the doctor might understand and believe that MSK is causing their pain. The doctor begins to appear more skeptical and less compassionate by the second (compounding the patient’s nervousness, and distress). Discouraged and completely demoralized, the patient leaves the doctor’s office feeling lost, confused, alone, a little nuts and no closer to finding help to manage their pain. In some very sad cases, patients have been labeled as drug seekers and are then, even further from help. (Thanks doc!)

There must be a way to work with doctors however and our approach might be making a big difference in how we are perceived when we ask for help. Perhaps the way we approach them can make or break how willing the doc is to work with us to manage pain.

Consider how our visits might appear from their point of view. Doctors are (whether we like it or not) the ones who went to school for many years to become the “expert” in medical issues. They have an expectation (and they might feel it is a well justified expectation) that patients should be coming with questions and they (the very well educated doctors) are there to educate us and explain answers to us (the people who did not go through medical school). Imagine how a doctor (with all that schooling) might feel if a patient (determined to answer questions the doctor has never asked) explains what they have found on the inter-web, self diagnosed and further, what treatment they want for their issue? Surely, a doctor might be a wee tad put off. And frankly, they probably don’t want to try and argue with us about it at that point. They have more patients who are also waiting for their help and hopefully, some of them don’t have internet access.

If we want to receive help from the doctors we go to, we have to show them that we respect their education, training and authority. We have to help them feel that we value and appreciate their opinion and judgement. That doesn’t mean we can’t talk to them like we are smart and well educated but when we leave them in the driver’s seat, we probably seem more rational to them and will be less likely to offend them by making them feel as though we don’t take their expertise and education seriously. (Think about the last time you were offended by someone who didn’t seem to take you seriously. How inclined would you have been to assist that person in that very moment if they needed your help?) Doctors are only human and those who are on the less humble side are in a very similar position when we tell them what “the facts are” and go in, guns-a-blazing and on a mission to “educate them”. That is not to say that we can’t educate them– but our approach needs to be more subtle and we need to be discerning. We need to engage in conversation. Respectfully ask questions. Respectfully listen to answers and then, perhaps,  mention that “I found a recent scientific article that was written by a professor who researches MSK and was wondering if I could get your opinion on it.”

Don’t expect they will agree to manage your pain the first time you tell them about the pain. Be patient. It might take many visits where you talk about the pain you are experiencing before they really start to understand the nature of what you are dealing with. Remember- there is a “war on drugs” and doctors have authorities who make them answer for the scripts they write for the heavier pain meds. Responsible practitioners have to be positive a patient REALLY needs a medication before they prescribe because there are a lot of people out there who try to fake their way into pain meds so that they can abuse them or sell them. Doctors can lose their medical licenses if they mess up with their prescription pads. From a doctor’s perspective, (especially if they have never met you before) how can he or she tell the difference between you and a seeker when the medical information they have been given says MSK doesn’t’ cause pain? It is very difficult for them- so we have to work with them too and help them see what they need to in order to be sure that we really do have pain.

Expect it will take some time. Each visit, explain the challenges you face with it the pain you are dealing with. Explain how it limits you in what you can and can not do. Ask questions about ways you can manage the pain without medication. Ask about how much Tylenol you can take safely. Ask about his or her opinion on non-medicinal management strategies and herbal remedies like California Poppy, Valarian and Katrom. (Don’t be afraid to research those options too- some have had success with them). Make it clear each visit that your goal is to manage pain– as opposed to getting pain medication to manage your pain. (when we make it about getting meds to manage pain, we look more like drug seekers do.) Further, when your doctor suggests a management strategy, try it. Give it a serious go. Maybe it will work for you. If it doesn’t go back and report to your doctor what your experience was with their suggestion and ask for another one.

It might also be helpful to realize that it is not necessary for doctors to connect your pain with MSK in order to help you with your pain. You don’t have to tell your doc that the pain is from MSK. They just need to know you have pain. After a few visits, and maybe after they have said “sure, you can bring me recent information you have found in order to get my expert opinion on it” perhaps you could let them know that you are a member in a facebook support group for MSK patients and- so strange- “all of them seem to have similar pain to what I experience.” Leave it to them to draw the conclusion that there is a connection between MSK and pain- or not draw that conclusion. And if they don’t make that connection- be ok with it. You might even say “oh, it doesn’t cause pain? Ok. Then I guess we are back to square one. What can I do?” When we get hung up on them believing MSK is causing the pain, we get distracted from what the real issue is: we are not functioning well because we have chronic pain and we need to sort out a way to cope and function with it. Making doctors believe ‘MSK is the cause of the pain’ should not be the goal.

Help them like you. Be a patient they will want to help.  Help them see that you are most interested in getting the best medical care for what you are dealing with and you believe they are going to help you accomplish that. Be kind, attentive and respectful. It will go a long way toward getting the help you need.







The Research on Pain and Fatigue in Symptomatic Medullary Sponge Kidney Patients is HERE!

The Tale of Two Awareness Ribbons

MSK Awareness Ribbon

The official MSK Awareness Ribbon, established by the August 25th, 2013

How does one condition wind up with two completely different awareness ribbons?

One, complimentary shades of green, teal and purple. The other, orange and green.

It is, as far as we can tell, a situation that has never arisen before.

Generally, an awareness ribbon is adopted by an organization and, from the time of it’s adoption by the organization, that ribbon becomes the “official ribbon” of it’s cause.

In the summer of 2013, an awareness ribbon did not exist for Medullary Sponge Kidney. The adopted the tri-coloured ribbon after a vote by MSK patients associated with the project, on August 24, 2013.

The new ribbon was added to the MSK Online project’s website, with many free images that anyone could use to promote MSK Awareness on social media.

The MSK Online Project created a separate MSK Awareness Facebook page and Twitter account to help spread the word and the new ribbon was welcomed by enthusiastic MSK patients. Many of whom changed their facebook cover images and profile pictures to the new ribbon. Many had customized graphics created with their names on them and there was a sense among all that MSK was finally going to be receiving some attention.

The ribbon was then added to the list of awareness ribbons on Wikipedia and many companies who offer specialty ribbons added the new ribbon to their lists of awareness ribbons. Some have made MSK awareness bracelets and nail decals. All was well in the awareness ribbon universe.

So how is it that there is a green and orange ribbon floating around cyber space, calling itself an MSK awareness ribbon?

An orange and green ribbon

This orange and green ribbon first appeared on Facebook March 3, 2014.

That is a question that all MSK patients who are interested in having their doctors take them seriously; all who want people’s awareness to be raised regarding MSK should be interested in learning the answer to. The reason we should be interested is because this is a matter that reflects on all who profess to function in the best interest of MSK patients who desperately need to be heard, perceived as a united front and most of all, taken seriously.

The creator of this new ribbon (in use as of early March 2014) has taken it upon him or herself to remove the official MSK ribbon from the wikipedia list of ribbons and has replaced it with their own.

How does the removal of the original ribbon help the cause or the people represented by it? How could it? The answer is, it doesn’t and it can’t. At best, it creates confusion and diminishes the credibility of everyone involved with MSK awareness (including the creator of the orange and green ribbon) and it will only serve to slow the positive momentum the original ribbon has on line. Why anyone claiming to be acting on behalf of MSK patients, would actively work against something that has been benefiting MSK patients is beyond comprehension.

It seems to be a poorly thought out PR strategy aimed, not at encouraging the spread of information and awareness, but at hindering efforts that have done a lot of good.

Ultimately, it shoots everyone in the foot…  And that way, nobody wins.

MSK Awareness Ribbon

Colours selected by a panel of MSK patients

Zohydro Dangers and Other Things To Consider

Today, CNN is reporting on the newly approved prescription drug Zohydro. It is a powerful opioid analgesic according to the report. It’s purpose is to treat chronic pain and is scheduled to become available in the USA in March, 2014.

There are a couple of problems with the world of prescription drugs that are over represented, misrepresented and underrepresented.

Prescription pain medication is abused by a segment of society. There are unfortunately doctors out there who willingly prescribe drugs to “patients” they should not. And there are some individuals out there who want to take pain medication for the purpose of getting high. These people are do not need pain medication- they have no condition that causes them chronic pain. Their purpose in taking the drugs is to feed the addiction- exactly the same as a junkie who seeks out meth, heroine or cocaine. That is, undoubtedly a problem.

Various special groups out there hysterically react to the release of medications like Zohydro because it too will be abused and when people abuse it, there will undoubtedly be deaths associated with that. Again, that is a problem to be sure.

There is yet another problem with the hysteria and inflammatory comments like those of a coalition of 40+ health care, consumer and addiction treatment groups who, according to the CNN report, ‘urging the Food and Drug Administration to revoke approval of the prescription drug Zohydro.’ They are quoted as having sent a statement to the FDA that reads “In the midst of a severe drug epidemic fueled by overprescribing of opioids, the very last thing the country needs is a new, dangerous, high-dose opioid,” 

There you have it- because there are people who will not use it correctly, it must not be permitted on the market. Along with that reasoning, we should also ban knives and spray paint because those too are abused and people die when they are.

What is repeatedly lost in all of this is that there are patients out there, who genuinely suffer with severe, or even excruciating pain who need main medications in order to function with some semblance of normalcy. For these people, pain medication does not cause them to feel high. It only causes a reduction in their pain so that they can cope with their day to day.  These patients are the people these drugs are being made for. These patients are “dependent”. Dependent because, without the assistance of the medication, they are not able to take care of normal daily life- because they suffer chronic pain.

Tragically, chronic pain sufferers are all too often lumped in with “addicts” – the abusers; the users who are seeking a high. These people are frequently humiliated by medical professionals who pass quick judgement, label them “drug seekers” and refuse to provide the medical attention these people need.

There is a legitimate need for drugs like Zohydro. It is criminal to punish the patients who suffer with excruciating pain on a daily basis to prevent the abuse of their medication by addicts and a few doctors who lack the integrity to only prescribe these drugs to those who need them.

Just like knives and spray paint, when Zohydro is used for the purpose it is intended, by the people it has been created for, there is no problem.

It twists logic and sound reasoning to suggest that chronic pain sufferers should not have the medications they need because some stupid individuals out there, with no right to the medication, might crush it up and snort it and then die.

Online Support for Medullary Sponge Kidney Patients

Dealing with the stresses and pressures of life are difficult. Add the issues brought into life by Medullary Sponge Kidney and it becomes an entirely different ball game.

Doctors and specialists who are (often admittedly) not well versed in MSK brushing off symptoms as being in your head; Friends and family who imagine you have psychological issues that are causing you to pretend you have pain, low energy and stamina; Well meaning people who are sure you will be cured if you just change your diet. These folks are all very well meaning however, they add pressure and stress to a circumstance the patient has no control over. And often, when an MSK patient tries to explain, it falls on deaf ears.

The emotional toll that MSK takes on those who suffer with it is often exacerbated by non-believers and those who seek to help alike.

For many MSK sufferers a great deal of relief comes in the form of a Facebook support group. Our support group has new members joining on a regular basis and the expressions of relief to find other people who understand are frequent. It is a life line to sanity for some who have been told they can not be suffering chronic pain, that there is nothing to MSK beyond a higher frequency of kidney stones.

If you are an MSK patient who has symptoms your doctors don’t understand, can’t believe or tell you must be in your head; If you have family who just don’t understand and a life that is demanding beyond what you can physically handle- come join us. You will find sanity, peace of mind, kindness, compassion and some very kind people in the Online Project Facebook group and it is only a click away. Join us!

Our On Line Support Group

For people with Medullary Sponge Kidney, life can be a lonely existence. Symptoms that have so far, failed to make the medical books are brushed of as being a manifestation of the patients imagination or worse, an attempt to deceive a medical practitioner into coughing up a script for pain meds. Family and friends can not see the struggle or the pain and so our expressions are frequently met with looks of incredulity. It is a terrible feeling to be suffering while nobody in your immediate circle of support is willing to take you at your word. Perhaps, that is the most hurtful of all.

For the members of our on line support group, the echoes of disbelief disappear as words of complete understanding and support flood the statements you make about how you feel that day. It is a feeling that most MSK patients would not imaging was possible. The key is finding a group that is there to help others as much as they are there for themselves. We operate a support group on Facebook that we think is pretty great. We welcome you to come check us out at the Medullary Sponge Kidney Online Project FB Group.