Has any female with AMN had kidney problems? I was diagnosed with end stage renal failure early this year. Came out of nowhere.

[MissSheryl]

I am 65 and started having AMN symptoms in my early 40's. I was diagnosed in 1998 after my second one week visit to the Mayo, first visit was in 1991 with no diagnosis. Then the very long chain fatty acid link with AMN was discovered and that is how they finally discovered what I have when I went back to the Mayo in 1998. I am now unable to walk without a walker and can't walk much with it. The symptoms started as mild and over the years have gradually become much worse. I have chronic, severe neuropathic pain in my hips, legs and feet with spasms. I take a lot of oxycodone and diazepam. I have tried many medications with no success. I have also tried a spinal cord stimulator and even had an intrathecal pump implant; all failed. I spend most of my time in a wheelchair now. The kidney failure was a complete surprise. No warning, no family history. I have always exercised and followed a good diet. I don't drink and am not overweight and have never been overweight, I only weight 100 pounds at 5 feet, 2 inches. The kidney failure with the associated dialysis is an enormous burden when combined with the AMN. I am on home dialysis 4 times per day with the support of my husband. Thankfully my younger sister has offered to donate a kidney. We are in testing now to see if there is a good match.

[Hidden]

Have you been tested for Adissons Disease?

[MissSheryl in reply to Hidden]

No. Is Adissons common in people with AMN? Does Adison's cause kidney problems?

[StevenSims]

Hi, My Urologist took some blood and told me my kidneys are not very good and sent me for a Urodynamics test, this revealed extremely high pressure in my bladder and they told me that I need to catheretise myself at least 4 times a day to release the pressure, I've been doing this since Aprill 2011 and my last 2 blood tests have come back normal.

Best wishes

Steve

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Sheryl

Thanks for asking this important question relating to men and women with AMN. I have been thinking about the kidney (renal) issue for while, as I know that some AMN-ers have had kidney problems.

The most obvious thought I have is that all of us have bladder problems of one form or another, and usually what we mean is that we don't void the bladder properly each time we urinate. If this results in the bladder being consistently under more pressure than that which is normal then back-pressure up the ureter to the kidneys can be the result. This could cause the kidneys to malfunction. I suspect that this may be the cause of renal problems in AMN patients.

I wonder if your kidney problems came about over time as a result of bladder problems?

Other contributors to AMN Easier have noted the importance of having regular kidney tests. Two standard blood tests for kidneys are the U & E (urea and electrolytes) test and also the "estimated glomerular filtration rate (eGFR), which roughly translates into % of kidney function. There are more specific tests including things like ultrasound that may be useful.

All of the above may be "old news" for you, however, and not much help. But I do think that AMN-ers need to do more to persuade their doctors to prescribe at least annual U & Es and eGFR tests at the very least. It may also mean that we need to ask for bladder pressure tests. Finally, we may all need to think harder about the catheterisation issue. Many of us - me included - resist this because of the inconvenience it causes, but perhaps we need to be more diligent in this regard.

I plan to do a bit of research into this whole issue which I will post in due course. Meantime, thanks for providing a very detailed profile of your situation in the directory and also for giving your location. If others reading this can do the same it will help us all.

With very best wishes

Chris

[MissSheryl in reply to COwithAMN]

Thanks for the input and it is not old news to me. The kidney failure came out of no where and I have had urination issues for the past 10-20 years. I had no clue that AMN could cause kidney problems. I went to the Hopkins/Kennedy Kreiger study and they never mentioned anything about this. Where can I find more info on how AMN is related to kidney problems?

[COwithAMN Administrator AMN EASIER Volunteer in reply to MissSheryl]

Hi Miss Sheryl

I am pretty sure that there is no connection between AMN and kidney problems, if by that you are thinking of inherent neurological or metabolic connections. The connection is the same one that anyone with a neurological problem may suffer from: it's simply that if your nervous system is not controlling the way your bladder and sphincter works, then your bladder may not empty properly each time you go. This can cause two problems (at least). The first is that you may be prone to bladder infections (all those bacteria that are not expelled promptly). The second is that your bladder is running on "full" more of the time, and this can cause back pressure to your kidneys. It's that simple I believe. What is less clear is whether everyone experiences this high pressure or whether this kidney problem is inevitable, etc.

I am going to see my GP soon to ask for the U & E check and the eGFR as well, so may get more info that could help.

[MissSheryl]

Thanks everyone. My sister has offered me a kidney. I am wondering if I should accept it if it will eventually fail anyway and I will be back on dialysis and my sister loses a kidney for no reason.

Sheryl

[izzabellezi]

Hi, I'm an 18 year old female carrier and last year I underwent a blood test as I was feeling very tired all the time and my creatinine levels came back abnormally high and have continued to do so. Due to no other side effects we stopped tests on this and investigations earlier this year, but I'm wondering if perhaps it could be linked? The fact that my levels were high meant that my kidneys weren't filtering properly, and I've always considered myself to have a weak bladder. Do you suppose these might be early mild symptoms?

Thank you,

Izzy

[StevenSims]

Hi Izzy,

I think the best thing is to see a Urologist an explain to them, it might be worth contacting some female members to see if they have similar problems, my best advice is to drink plenty of water 2L plus as when the urine is more concentrated it can irritate the bladder.

Best wishes

Steve

[alsrgnt]

Hello MissSheryl,

I cannot stress enough that you should be self-cathing. (Thank you StevenSims!) The connection between AMN and potential renal issues is very clear in that we do not fully void when we urinate and this back flow from the bladder to kidneys is damaging. If you accept/have accepted a kidney from your sister, the only way to keep that bladder happy and properly voided is via catheterization.

Please, please consider this, it will be life changing and keep you on a consistent urination schedule and fully void your bladder.

All the best to you,

Andrea

[StevenSims in reply to alsrgnt]

I 100% agree!