Is this the type of thing an endocrinologist can help with?

frequent urination is common in PKD and no fun, especially at night. I never heard of vitamin E as a remedy and 4000 units a day sounds awfully high. wondering why tonic water too.
plain old H2O sounds safer but what do I know? any water taken before bed will have to find a way out.

neglected the cramps, have your labs been done lately? a deficiency or surplus in any of your electrolytes (potassium, sodium, phosphorous, calcium, magnesium etc.) could be the cause. wondering if the tonic water is contributing to this.
get a copy of your labs and check them out.

Helen, thanks for your advise. I just had my labs done and always get a copy for myself. Everything looks ok? This is so frustrating that I can't tell you. The reason for tonic water is the quinine in it, it usually stops the muscle spasms. They can give a script for it rather than drinking the water, maybe I will have to go that route. Thanks again.

Norma, I wonder.... wonder if you are having the same issues I have been having. I shared this on the transplant page, probably a year ago. I thought it was from my car accident a year and a half ago, thought it was flat feet and those kinds of issues, but I got to the point that in August I was so depressed because my feet hurt so bad, I just couldn't walk. I have done EVERYTHING that I could think of to work it out. Then I got the flu, and went into a deep depression. I was down so far I scared myself. One morning I realized I needed help, who who the heck could I ask?

I went to a Physical Therapist, and he gave me some very simple back exercises for my for my back and sciatic issues. Then I got a cold laser (LaserTouchOne, which I really like, but it isn't cheap). Then, even though I had asked my doctor about magnesium, he said, "that's fine". But I couldn't see any tests for it in my labs. So I just started taking some magnesium again (some of the folks on the transplant team said that their doctors prescribed 800 mg a day!). So it was almost immediate relief. Not complete but enough that I can sleep at night. I take Natural Calm at night which is a simple powder that you dissolve in hot water.

Further investigation says that many of the meds we take (for me immunosuppressants) leaches the magnesium. So... that's my story. I have begun to figure this out. I will certainly bend my doctor's ear next time I am in there.

I still have to get up, often two or three times a night (not always) but I can SLEEP!!! That has been a major issue for me.

So, that's my story, probably not exactly like yours... but I wonder if it helps?

And yes, back when I was on dialysis, those leg cramps were KILLER, and doc suggested that it used to be quinine that they could give, but for some reason, you can't get that anymore.

Let us know how you are doing.

Heather, that's a good point and I was having cramps awhile ago and my neph upped my magnesium.
we are both post transplant and on immunosuppressants tho, Norma should not do this unless she is low on mag. Norma, check your labs to see if magnesium was tested for.

I feel for everyone with kidney problems. It's almost impossible to find honest answers when you are trying to get better. Fortunately, I came across some natural remedies that reversed my kidney disease and saved my life. This is one of the places where I got some good information.
Best of luck to everyone!

Norma is this like restless leg syndrome? The tonic water is supposed to help that a but I don't know that you have to drink a lot of it just before bedtime. I do know you have to get the Swepps (sp) - the box says with Quinine and it's the Quinine that helps with the restless legs. My husband had that too. I got him a lazy boy chair and he basically stayed up all night and watched TV from the chair so he could drift off when he could. Crazy thing is he could sleep all day no problem. He did the exercises too, deep knee bends, and that helped a bit.

Norma,

I don't drink any fluids during the evening and I'm still up and down to the bathroom all night. If I drank anything at bedtime I might as well take my pillow to the bathroom and stay there! Could it just be the timing of the fluid intake that's keeping you up? PKD involves a urine concentrating defect so frequent urination is an early symptom and it is indeed very annoying. Can you take the tonic water at a more convenient time of day (before 8pm)?

Shirleymac,

I've been wondering whether I have some form of restless legs syndrome. My lower legs start to itch at night and it drives me MAD. I scratch them to pieces nearly every night. My GP was of no help whatsover and told me to use anti-itch cream, which does nothing. During the day there is no itching at all. Perhaps I'll have to try the tonic water thing.


Chewitt

No, I don't have restless leg syndrome, NP gave me meds for that and it just about killed me!! Just about everyone in kidney failure will experience muscle cramping. My new doc gave me a script for small doses of quinine, it helps, some of the time. I looked at my labs and there is nothing for magnesium! They don't even check for that. I called the office and asked a nurse why they don't check it, she said that it's usually insignificant!!!! Means nothing?? I have a file for the past 20 yrs. and I looked at everyone if them and I have never in my life been checked for magnesium!!! Who is checking you for that? Kidney docs, GP?

Ok, I just found out why no one has ever checked my magnesium levels and the reason is, it can't be checked with blood work, has to be a 24 hr. Urine Collection! Look it up yourselves!

Don't think that's right Norma, as I've seen numerous sources referring to a blood test:

http://www.labtestsonline.org.uk/understanding/analytes/magnesium/tab/sample/

http://www.patient.co.uk/doctor/magnesium-disorders

Have you been fobbed off?

Chewitt

my neph checks my magnesium. since transplant it runs low but before that some kidney pts have high. mag. and need to avoid things like milk of mag.
we are all different and our diets are different.

Chewitt, that is the complete opposite of what I read? That in itself is very distressing!! It did however say renal patients should use it with caution. I am going to buy some and try it, see what,if anything happens. I can't feel much worse than I already do!! I will ask the druggist about the appropriate amount. Thanks girls! Oh, what does "fobbed off" mean?

Very interesting discussion. As a former kidney disease sufferer, I know how frustrating it can be to find answers. Just wanted to share a link that helped me out a lot when I was struggling to get better:

http://journalofnaturalhealth.com/kidney/kidneyhealth.html

Best of luck to everyone!