Medullary Sponge Kidney (MSK)

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Medullary Sponge Kidney (MSK)
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    I'm new here!

    Hi, my name is Moxie26. I'm here because I have Medullary Sponge Kidney. I was diagnosed when I was 15 and I'm now 61 ! I'm too young to be 61, but on the other hand some days I feel every second of those years because of the CHRONIC PAIN associated with MSK. I have a chronic kidney infection that won't clear because the infection has attached to the stones. And if that's not enough this pass year I have had both knees replaced, spine surgery, gallbladder surgery, cataract surgery for both eyes, lithotripsy and kidney surgery. I still find some time to have fun spend time with family and enjoy several different hobbies ! I would love to find a clinical trial for the MSK so if anyone hears of one please let me know. Thank you

    #MightyTogether #MedullarySpongeKidney(MSK)

    2 comments
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    Hi I’m Katie! I was diagnosed with MSK at 17 and I’m looking for others like me ❤️

    #MedullarySpongeKidney

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    I’m new here!

    Hi, my name is KateSnow. I’m 19 years old I'm looking for support and help in finding ways to apply for disability. I have seizures. MSK, and ovarian cysts. I cannot drive and I live in constant pain. I just want to be supported and heard. ❤️

    #MightyTogether #PTSD #Anxiety #Depression #Migraine #medullaryspongekidney(MSK)

    11 comments
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    I’m new here!

    Hi, my name is believe88. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #medullaryspongekidney(MSK) #ADHD

    3 comments
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    Alkaline water for kidney disease improvement #MedullarySpongeKidney

    Hello!

    I have had MSK symptoms and issues my whole life…from overactive bladder to up to 9 stones at once. Always blood in my urine and often protein and ketones, low vit d, etc.

    Formally diagnosed in 2014 and I’m 30 years old now.

    I started drinking pH 9.5+ alkaline water a few months ago and here I am at my Nephrology appt and they are telling me how my kidneys have improved.

    I went from 9 stones to 0!

    While there is still blood in my urine, they still say my GFR has improved and my overall function and panel is excellent.

    This is good news and I really think it’s because of the consistent use of alkaline water.

    I thought this could help others who are struggling to stay hydrated and struggling with chronic kidney stones like me!

    Post

    Getting my frustration with the NHS out here.

    My rhuematologist finally got back to me with his report after he told me he would have to talk to his colleagues, to find out where to send me regarding my severe pain, muscle weakness & bone deformaties. He told me he didn't know enough to diagnose me himself & could only refer me to physio for hEDS & HSD. But told me from the referral she suspected other types as I have very stretchy skin in places & scars that could be classical. He told me I could get referred to physio from him, I told him I need to sort out braces for my instable joints if I was going to be able to improve mobility enough to do physio. He told me he didn't know how to get braces for this type of illness. He told me he would ask his colleagues with further help. However, it's been the same useless information he told me in the appointment in his letter, that he can offer physio & pain management, both of which I've seen 5 times over the 9 years I've been heavily disabled with these illnesses. The pain clinic didn't offer me anything accept telling me "people manage pain better than others." & they've read the letter from the MSK specialist they both told me they are not willing to work with me as I sound more severe than they are used to. I told him what he was saying wasn't helpful as it still left me in the same position with no continuous support or a real diagnosis into what type of EDS or HSD I have, he left appointment saying he would try to see what he could do. I'm so disappointed this is the care we receive from the NHS after it claims to care. My thighs partially dislocate trying to walk, my knees partially dislocate trying to move my leg straight. My shoulders partially dislocate lifting upwards, my wrists dislocate trying to open jars, my shoulders fully dislocate trying to open drawers or security/heavy doors. My neck & jaw partially dislocate smiling, laughing, eating or talking. My back partially dislocates rotating in bed. My knuckles dislocate trying to open things. Everytime I've done physio it's caused CRPS & fibromyalgia flares that mean I can't do anything else at all other than push my body way too hard at physio & I don't improve. When I've continued despite the fact I can only do it once a week, it still caused muscular strains & I've been discharged after 6 months of not improving enough. I don't see how I could do that now as I wasn't subluxing or dislocating as often as I am now back then, especially now I've got bone deformaties & muscle development issues from dislocations that didn't get medical help because the dr's dismissed everything to do with my joints as mental illness. I didn't know what spontaneous dislocations were, as I was growing. I'm still scared I have the rarer types as my uncle passed from something random erupting & my aunties & some cousins all have organ issues too. I just don't know how to get hold my damn rhuematologist to go over it all. I've tried countless amounts of times to ring & met with dead tone. #EhlersDanlosSyndrome

    5 comments
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    The new uptick of COViD

    I got the Vax was ok for 2 weeks and the my husband freaks me out by saying people are dieing from the new variant that have been vaxd 😒 so i only didnt wear a msk 2 weeks before getting freaked out all over again I was as tough as I could be for a year and a half i did the shots so I guess im losing a bit of hope that this thing will go away

    18 comments
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    Getting a diagnosis #Diagnosis

    Feeling flat today been managing to keep myself up but Iv flattened! I saw msk last week wasn’t great really I managed to do the exercises so he basically said I’m ok nothing wrong. I got the letter today of his report it’s positive and negative when I showed my husband he said yeah it sounds like he thinks your making it up and having my husband confirm my fears I just feel flat now! I’m in agony every day and can hardly walk daily. Iv applied for pip and disabled badge how am I ment to make them believe me if doctors don’t! Should I just keep asking the doctor? I am been referred to pain so maybe I can talk to them? Ugh spent my whole life in pain but only just started seeing the doctor again about it after a slipped disk knocked me off my feet 6 months ago. I have hyper mobility, scoliosis and facet joint arthropery I just feel is that enough of a diagnosis as every time I talk to doctor they as oh yeah those things are common your fine crack on! #JointHypermobilitySyndrome #Hypermobility #facetjointarthropery #fja #Arthritis #ChronicPain #chronicpainsufferer #amidisabled #Disability

    3 comments
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    Are there Medullary Sponge Kidney specialists?

    I was diagnosed with MSK a few years ago. My flare-ups are increasing in their frequency and duration. My urologist and nephrologist are passing me back and forth, seemingly not knowing what to do about it. I understand this is a rare disease, but how does everyone else manage this? Are there specialists just for this disease? How do I find them?

    #MedullarySpongeKidney

    1 comment