a few questions - how unoriginal of me! long, questions in red if you are rushed.

[gowiththeflow]

First I want to say thanks to all who have so far welcomed me here and been able to answer any posts, not just mine. I know first hand how challenging typing can be for some of us, limbo or diagnosed!

Plus, those of you with much knowledge and experience to share, it really is very cool the way you reach out to others here. Giving despite your own challenges is a very positive and caring thing to do!

Wow, excuse me, so serious tonight, oops, early this morning. But humor escapes me right now, so on to the questions.

(I had a sick visit with my GP today, and he agrees i have kidney stones, have a ct monday - oh joy, steroids for 2 days because allergic to the contrast, plus the huge midnblowing 2 day headeache from the contrast die afterwards, thrilling.)

question 1 - if this isn't kidney stones, can unkown neuro issues like MS create kidney issues? if so, what and how is it treated?

question 2, same as above, but concerning your heart. I have to see a cardiologist immediately because in my visit the chest pain with the kidney issues made doc run an EKG, and there are changes in mine, enough so that doc who doesn't prescribe pain meds did, so kidney pain wouldn't make heart worse.

To top it all off, I am under strict orders to do NOTHING STRENUOUS! Doc has me a bit afraid. He has never dealt with me this way before, and the look on his face and insistent tone of voice spoke volumes.

Whatever anyone wants to call (or not call) what i have going on, ii in full blown gear. major flareup unlike any other the last 25+ years. IF God forbid this is anything like MS when all is said and done, i was thinking relapsing/remitting. but now am thinking this may be a permanent downhill slide. 5 months and things are not seeming to get better, before at the most i had a few days to a couple of weeks of symptoms.

thanks in advance for any help, and reading this long vent of sorts. as my youngest will tell me, "too many words Mama. enough already!"

hope, joy and love sent to everyone,
Flow.

[JerryD]

Flow,
You seem to be presenting some very big challenges in your health picture. Let me start by stating that I am not a doctor, I am a television production sound tech. But I have MS and I am aware of how MS can affect your bladder and urinary tract.
I read on this site where kidney stones are from a lack of calcium in your system. I also read that the lack of calcium results in the body getting the calcium from the bones ( your bones). And that leads to osteoporosis. Also, a protein rich diet higher than 20% of total calories can lead to UTI's.
I found that hard to believe but I decided to cut my protein intake. I was having a lot of UTI's. I had one after another for about a year. I cut back on my protein intake and I have not had a problem for about a year. I have increased the amount of Fish oil supplements and vegetables in my diet. They seem to have made a difference.
I guess what I am getting at is that I would suggest you figure out if your diet is helping you or hurting you. Because your list of problems sound food and diet related to me. Good luck

[22cyclist]

Kidney stone pain is pretty specific and localizing, therefore you are getting the CT to see if it is there, how big it is, to see if you can pass it on your own or if it needs surgery to remove it...place a stent blah blah blah.

What DMD are you on?

As far as your heart issues that could be due to the DMD, or general health. MS generally does not affect the heart itself.

I am glad you took the script for kidney stone pain. I have had them...horrible pain. They can be from a specific type of kidney stone that is from chronic infections from urinary retention in MS.

If it is a stone, you need to see a urologist.

I will be thinking of you.

[gowiththeflow]

Flow,
You seem to be presenting some very big challenges in your health picture. Let me start by stating that I am not a doctor, I am a television production sound tech. But I have MS and I am aware of how MS can affect your bladder and urinary tract.
I read on this site where kidney stones are from a lack of calcium in your system. I also read that the lack of calcium results in the body getting the calcium from the bones ( your bones). And that leads to osteoporosis. Also, a protein rich diet higher than 20% of total calories can lead to UTI's.
I found that hard to believe but I decided to cut my protein intake. I was having a lot of UTI's. I had one after another for about a year. I cut back on my protein intake and I have not had a problem for about a year. I have increased the amount of Fish oil supplements and vegetables in my diet. They seem to have made a difference.
I guess what I am getting at is that I would suggest you figure out if your diet is helping you or hurting you. Because your list of problems sound food and diet related to me. Good luck

JeerryD thanks so much fo your repliy.
I'm fully with you that diet has a huge affect on health, anybody much less someone with challenges. Sad that you had so may urinary issues, but how wonderful you have been able to deal with them in a simple, natural, common sense way. The best way IMHO.

I don't have UTI issues, gratefully, but stress incontenance for some time no one could figure out went away after my neck surgery. when this flare up hit, it returned, and my strength dimininished in limbs, grip gone, uncoordinated worse than ever, etc. full workup including MRI and check in with neurosurgeon late July, august completely ruled out any issues with the repairs done. He is the one who thinks someone missed something all these years, so looking for a skilled neuro for a full workup.

contradicting ANA tests, and the usual autoimmune battery etc are puzzling. I have a large number of MS symptoms, and lupus was already ruled out.

have had low B12 before, and vitamin D, but corrected. My bone density is good, but head to toe arthritis from a young age now has many joints that have lots of calcium deposits in them, rheumy says is OA.....I eat a healthy diet, wish it could be completely organic but not affordable. Working on that! Protein intake if anything is too low - and i tend to graze on several small meals a day.

shouldn't hit post as all this is TMI, but typed it in so you get it. Best of luck to you as well.

[gowiththeflow]

Kidney stone pain is pretty specific and localizing, therefore you are getting the CT to see if it is there, how big it is, to see if you can pass it on your own or if it needs surgery to remove it...place a stent blah blah blah.

What DMD are you on?

As far as your heart issues that could be due to the DMD, or general health. MS generally does not affect the heart itself.

I am glad you took the script for kidney stone pain. I have had them...horrible pain. They can be from a specific type of kidney stone that is from chronic infections from urinary retention in MS.

If it is a stone, you need to see a urologist.

I will be thinking of you.

Hello again 22cycliist, and thanks for your helpful reply

I am 99 percent positive i passed a small stone a week ago. My body went from doing a bare trickle for two days, accompanied by pain from beneath shoulder blade, that moved down, and suddenly, after sever pain wrapping around to the front, whoosh, like someone opened up a fire hose, with obvious freshh blood vsible.

kidneys are a concern partly because i have medication created diabetes for 12 years, so watch protein intake.

Thanks for sharing that MS doesn't directly affect your heart. Am not on a disease modifying drug yet since I'm still a puzzle. The favorite phrase used on me is "we can't tell you what is going on, or help, but here is a referral to someone else" often in tandem with the "learn to live with it speech".

The fact that when testing certain pharma drug levels on me that they do not show up despite my taking the meds as prescribed makes me think something is very amiss. No one but me finds it disturbing though.

In the last year my blood pressure has sky rocketted, partially due to chronic pain. Kidneys i know play a big part in blood pressure. My mama had a kidney die on her, cause unknown, not found until they had to do her complete testing because of cancer. So, am a bit rattled with all that is going on.

My answer to all the complicated health has been to do natural things to help myself, clean diet, stretching since i am just now to the point where able to begin an exercise program slowly, clean lifestyle. And a whole lot of working to find mind body spirit balance!
thanks again

[maitrimama]

Hi Flow - As far as MS is concerned I have accepted that I am in limbo and it feels like there are lots of puzzle pieces that don't fit together to make a clear picture. Sounds like you have lots going on as well.

I do have some current experience with kidney problems. Glomerulonephritis is what they are leaning towards, it can beKidney caused by a bunch of things including autoimmune issues and infections that can involve the heart. The Mayo Clinic web site has good information.

Kidney stones have been a problem, I just had a biggie blasted a couple of weeks ago. Contrary to what I have read lots of on these forums my stones are not being caused by a calcium deficiency. They have analyzed the stones, done 24 hr urine analysis, calcium and vit d levels and bone density. The only problem is low vit d.

My big question is why are they using contrast if they know you don't tolerate it?!?!?! Ultrasounds, xrays and ct scans without contrast are all commonly used when looking for kidney stones. My Urologist says that using contrast is the lazy way out and good radiologists (and urologists) don't need it. You have every right to say no to contrast.

Good luck and I hope they sort out what is going on - M

[gowiththeflow]

Hi Flow - As far as MS is concerned I have accepted that I am in limbo and it feels like there are lots of puzzle pieces that don't fit together to make a clear picture.

The Mayo Clinic web site has good information.

The only problem is low vit d.

My big question is why are they using contrast if they know you don't tolerate it?!?!?! Ultrasounds, xrays and ct scans without contrast are all commonly used when looking for kidney stones. My Urologist says that using contrast is the lazy way out and good radiologists (and urologists) don't need it. You have every right to say no to contrast.

Good luck and I hope they sort out what is going on - M

M, thanks for the reply - hope your own issues get sorted out too! so i have a fellow puzzle here? you must get as tired of docs and tests and procedures as i do. Your location states it quite nicely.

I will def check out the mayo site for Glom. info, see if anything makes sense. low vitamin d becomes an issue in so many with chronic illness, and many people don't know how much it affects our ability to handle pain, and more, including depression.

the medical sytem in whole here is rather backwards, esp. the hospital. for goodness sake, even diet controlled diabetics have their fingers sliced, not pricked to test, and are forced to take insulin on the ancient sliding scale. If you refuse, they order a psych eval. we are looking to move where a far better medical system is. The idea of a back to basic organic living community in touch with the knowledge that we are more than a body is enticing.

am looking for a lovely cave to hermit up in until after this next week, and hoping the prednisone doesn't wreck my family or cause distress to any med folks in my path. a stack of humor books is on standby. Comic relief is a good thing! (will knock a skylight in the cave roof for reading light)
best to you,
Flow

[unsureofanything]

vit d?

hey flow

i am massively underqualified to comment on what's going on here but i did notice low vitamin d come up a few times and i tend to have that too (no kidney problems though). been on D3 supplements for a while, the bottle says

"Vitamin D helps your body absorb calcium and phosphorous, important for maintaining healthy bones and teeth. Supplementation may decrease the risk of falls in the elderly (by increasing muscle strength) which may decrease the risk of fractures. Various studies have found an association between low blood levels of vitamin D and the incidence of osteoarthritis as well as bone fractures."

also someone mentioned B12 being low sorry i tend to get lost sometimes on who is talking to who about what but i also was tested for B12 (I had low but normal levels, ie not deficient) as it might have caused my burning feet, didn't go away even taking b supplements that's what lead to the MRI so in my case nope its not B12 but that doesn't mean neuro symptoms in other people aren't.

back to the D i was thinking if you have low muscle strength it might make it difficult to hold your wee, and stress might make it worse. no idea what causes kidney stones but the heart is a muscle so maybe that's part of it?

maybe ask the doc before supplementing though it sounds like you're walking a tight rope but try not to stress (if you can) as it makes your hands and feet slippery. xxxxx good luck to you

[gowiththeflow]

thank you

hey flow

maybe ask the doc before supplementing though it sounds like you're walking a tight rope but try not to stress (if you can) as it makes your hands and feet slippery. xxxxx good luck to you

unsure, appreiate the much needed laugh. stress makes the hands and feet slippery. what a lovely way to put it. yes stress does increase symptoms, even positive stress like a move or promotion or adding a family member, etc.

horrendous day. will leave it at that, but thank you!