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Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

Is it possible to have children with MSK

MSK-Kelly.. and to anyone else that can shed some light on this topic? I am 33 and would like to have children sooner than later. With all this pain and stones is that all possible or is this something that won't be in my future? I cannot maintain relationships with men because after a while they basically get sick of my seing sick....I have found a wonderful man who is fully aware and supportative and he's also older and wants to settle down. In a way I feel as if I am too much of a burden to any man but I do want to have children. How is the pain manages? Could my eggs be damaged due to the radiation from the CTscans? And again thank you everyone for helping me become more understanding and aware of this condition.

Jay
10 Responses
1269632 tn?1297114302
Jay,
I feel exactly the same, who would want me the way I am, hobbling around on a stick full of pain killers. I also wonder if you could safely be pregnant and breast feed on morphine like I am. I think if you've been lucky enough to find someone who understands how you are, keep hold of him with all your mite :0) x x
Avatar universal
Jay,

I have 3 children.  I did have issues with stones during and after pregnancy.  I did not breast feed because of the drugs issue, but I don't regret any of it!  I just worry that I may have passed the condition on to them.  Some of the studies say it is hereditary, others say it's not!  I just pray it's not, for their sake.
489228 tn?1291535054
Jay, it is hard for someone else to tell you what is right or best for you.  I found out I had MSK after having my children.  I did have stone and infection issue with all 5 of my pregnancies though.  The worst being the major tramatic stone surgery while I was nursing my youngest daughter.

Really i would encourage you to have an apt with your doctor and discuss what meds you are on, and the safer alternatives etc., in case you do get pregnant.  Many imperfect or ill people have children every day.  To me the deeper issues arises in are you going to physically care for a child.  Again, no one but you can answer that either.  I know how hard it is for me as a single mom now with 2 teens...,
489228 tn?1291535054
Whoops it posted before I was done.  I know it is not the same but you might even consider adopting an older child.  I say this because our foster cares are filled with older children that need a home and a child at least potty trained might be a help to you as well.

That said sometimes as a mom it is only the kids that can keep me going and I do a lot of things I would not for anyone else.  I also find babies somehow make the pain levels fade into the background!!

Shelly
Avatar universal
After getting a confirmed diagnosis today I totally pushed everyone away... Including the man who "said" he would be there. I can't seem to trust anyone because my x-fiance' said the same.....

I commend the single mothers out there dealing with MSK, being a school teacher myself I cannot even think about caring for a child when I get home. All I want to do is sleep because well I am sooo tired. I have a dog and that seems to be my comfort. He is always there for me....

I would like to have children and a part of me wishes I didn't wait so long but there is nothing I can do about it now. My family and friends are trying to be supportative but they have no idea what this is like. I have to cancel plans all the time, wish is hard when maintaining any relationship. I love to travel and those have vacations have become more far more less in between.

Betsan... Could you tell me more about the nerve blocking procedure? My Dr. said I am also suffering from the same brain memory of pain condition.

Hopes this finds everyone well.

Jay
489228 tn?1291535054
Jay,
    Though from my experience with MSKer's I do believe that as with any chronic pain issues pain pathways can get set up in the brain that can cause or increase chronic pain issues, for us there seems to be at least for most more the one cause.  I have seen patients have the nerve ablation procedures with varying degrees of success and long term vert few seems to improve but not gone.  I was on Lyrica for some time for nerve pain and it did help but honestly I went off because of the weight gain etc.

My point being before having any surgical type procedure there are some less treatments that you need to try first.  

1.  Increase fluids and decrease meats to 6oz.. about per day.
2. Get your Vit. D levels check and treat deficiencies
3.  Try natural antibiotics
4.Take script antibiotics long term.
5.  Dr. Wolf's procedure or nerve alblation etc.

Read the articles on BIofilm infections here and on our MOARK IC website, on the menu item for MSK.

Jay, I understand your frustration but hope you will consider some other steps first!

Shelly
1269632 tn?1297114302
Hi Jay,
Keep going sweetie, one day at a time, small steps that's what I keep telling myself...
As a teacher I feel exactly the same. It's 7pm here and I'm curled up in bed with my two cats. The nerveblock that my pain management dr did was to inject anaesthetic and I think steroids around and into my kidney. My kidney is still jn agony from Monday and I started to have pain down below again yesterday. As there's no school tomorrow I'm going to try and not take my pain meds for as long as possible and see what happens.
I understand what you're suggesting Shelly about other options and if you can then do. Here in the UK you don't get a choice about treatment. You're just made to feel grateful for the pitiful treatment you eventually receive. X x x
168348 tn?1379360675
COMMUNITY LEADER
Hi,

My Uro said that there isn't enough studies/evidence to support if we are genetic or not

WELCOME!

C~
1269632 tn?1297114302
Over here some people say it's hereditary and others not. All I know is I have it, my brother has it, my dad has it and so did his dad…
489228 tn?1291535054
I am sorry for all In the UK have so few options for your health care issues!  I finally got on Medicaid here after my husband of 27 years and I  separated, before that we paid for all my care out of pocket.It took a toll on our family but I had freedom to make decisions with my doctor.  I don't know what i would do without my Medicaid now but this disease is tough really tough to get treatment over here now I can only imagine trying to get help in a social medical system!!  This is not meant as a criitism of those docs in the UK, they like many doctors here are just not taught, few are about MSK and they are running ragged.

Some options to consider though, would include trying some natural antibioitcs???
I was under the impression that it was easy to get herbals etc, in the UK?


Again wish and pray for more options for all,
Shelly
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