Disability with MSK

[honeylr]

Hello everyone.  I am a newcomer with the Medullary Sponge Kidney Diagnosis.  I have just found out after 5 years of relentless pain, tests, surgeries, medicines, etc. that this is my problem.  I currently have over 400 stones in both kidneys (which are really small and located in the 12 tubes in the kidneys don't know their names) so I still have a ways to go.  I am averaging 10 to 12 kidney stones (PASSING THEM) every 3 months.  So that means these are the ones that have gotten big enough to drop and pass.  They average around 4 to 6 mm.  I have passed over 200 stones since 2006, after having my baby.  I am now 30, a single mom, with a 4 year old child who just started Pre-K, first time home-buyer a year ago after my divorce and now unemployed with no luck for the past 6 months of finding a job due to my medical condition.  I have just recently in the past 4 weeks had 4 surgeries with a new urologist who came into town and am so thankful that he came here.  Everyone else was pretty much "you're **** out of luck" and will just keep making the stones but this physician is a least trying to reduce the amount of stones made.  My problem will never go away but it may be liveable after awhile once I have been on a regimen for a few months.  

My question is has anyone had any luck being approved for Disability for this type of problem/disease and if so how much trouble did you have in getting it?  How long did it take and did you have to get a lawyer to help you?  

Among the depression and pain and everything else I want to be able to take my life back and start living again.  Going through a divorce was enough but now I can't even hold a job and its really starting to make me think twice about things.  Would it be easier to just give up?  I have always said hell no but every turn is bringing me to another obstacle and my family is starting to be effected by this.  Just needing to get some advice and see if there are any others out there that have had this problem and what they were able to do about it.  I hate to spread my feelings on the internet but sometimes its better to get it out than keep it in.  Thanks for any advice and I hope that everyone on here is doing good with this problem.

[Pman1]

I have never posted here before but did try and contact MSKKELLY and as far as I can tell haven't received a response yet.
I AM on SSDI which was approved 9/17 but actually taken back to 4/14.  
I have other issues but none that would or should have been approved for SSDI if it weren't for the overriding MSK chronic pain.
So yes, it is possible to get approved for this issue but I really wonder if anyone has been approved who had no other medical issues.

Pete

[Scarrgo]

I'm new to the community. I have Msk. I've have had major problems since 21. My urologist thought I would be in dialysis by 40. I'm 43 and had to have an ultra sound. It came back not good I went today tohsve a lasix renal washout scan. They said it wouldn't do anything to me I'm so sick. Nausea, fatigue,and now some pain in kidney. Anyone else experience this or have had one. Im tired of surgeries! Tired of being sick.

[ChitChatNine]

From what I have heard, it takes a few times for many to get approved for disability. So sorry you are having to go through this .. it's awfully stressful on top of the physical pain.

Welcome to the community!

C~
MSK with stones

[SpongieLady7]

I was diagnosed with msk last year, it has been a struggle with constantly passing stones, flank pain, and kidney infections. If there is anyone just needing an ear ***@****  I have a spongie friend also with this disease who was denied disability and am looking for tips for her next court hearing on the 30th. If anyone has some info that would help please email me! Stay strong!

[Momof2sweethearts]

Shelly,
I am newly diagnosed with MSK.  I would love to talk to you more and get more info. My email address is heather_cooper***@****

Thank you so much,
Heather

[MSKshelly]

First of all let me apologize, having just gone through a divorce myself I am struggling to keep up and for some reason my updates are not coming to my -mail address. SO IF ANY OF YOU SEE A NEWBIE POST HERE WHO NEEDS HELP PLEASE PLEASE SHOOT ME AN E-MAIL, we are not allowed to post them openly on medhelp.

Honey, you are not alone in your pain, problems and desperation.  BUT that means that your not crazy either and maybe we can find some treatments to help your regain your quality of life.
I have countless stones I have been told so I can relate.  After my husband was forced to leave our home in March I applied for SSI and amazingly got it on the first try.  That is rare and I feel blesssed.  The key to getting approved with any disablity is documentation.  there are many great trackers on this site for pain etc.  Reliefinsite partnered with medhelp to create one diary here.  They also have a more indepth free online pain diary that can allow you to track your pain and it's impact on your daily life and even print out the results in cool graphs etc. It is worth checking into.  Please also feel free to pm me.  I have many pdf articles provided to us at no cost, (all of which if we had to purchase them would be expensive). The only key being I have to e-mail them to you for your personal use to get help and treatment. We can post or publish these directly here on medhelp etc.  I can also not openly post my e-mail address on the wall but if you send me yours in a message I would be glad to e-mail you mine as well!

I look forward to talking to you more in the days ahead!

Shelly

[Scarrgo]

Shelly, I too have been diagnosed MSK. I've battled countless surgeries for stones. I've ruptured my kidney. I'm 43 and my first stone was at 21. As a child I had UTI's constantly. I recently got a renal ultra sound. It came back not good. Dr thinks last stent might have caused damage. Today I did a lasix renal washout scan. I feel horrible. They said it wouldn't effect me but I'm exhausted and nauseated. I had some renal Colic. Has anyone went through this? Sarah

[honeylr]

Thanks Kerry for the encouraging words.  I have been reading posts on here as well and have found some hope in others words.  Thanks for your response and hope you keep up with your better quality of life.  That's all we can all hope for.  Take care.  honeylr.

[toomanystones]

Hello honeylr.  I am so sorry to hear about your pain and obstacles regarding all of this.  I am pretty new at this as well, and I have been in contact with Shelly, who has provided so much informtaion, but most of all "hope" for patients with MSK in constant pain.  Believe me I had had days where I have asked if it is worth it, but now I am just putting everything into fining a better quality of life.  There may not be a cure for MSK yet, but there are ways to help reduce the pain..it's just figuring out what will work best for you.

I do not want to go on and on because I really have just started researching this, but I am sure Shelly will reply to your post and she has a lot of information she can help you with.

You are not alone, and keep the faith that it can get better-I have been reading some posts on here and I have some hope that it will get better.

Take care,
Kerry