[doublewammy]

It's difficult to post, because as I am sure many of you felt posting the first time, I don't want to be here! I definetly have pn Neuropathy. I haven't had all the test for autonomic, but there is no doubt in my mind that is what I have. Disgestive issues,get burning hot, but don't sweat. My blood pressure is elevated after being stable for years. Still hoping for a miracle that it is not autonomic. I have been lurking for several days, reading many of the post. I was just wondering how many on here have autonomic and what functions are affected. Also, how bad does it get? My neuro. told me it would get worse. Just wondering how much. I read a lot about the pain. Right now I have numbness, tingling, pain etc. in both legs mostly up to my knees, but sometimes further. I have it in both hands and arms and some on the left side of my face. What degree of balance problems do you have? How long did it take to progress? Do the balance problems change as pain levels can from day to day? Now a little about me. I am an almost 50 year old woman. I am married and have 2 girls (16&10) I had a kidney transplant in 1999. I have been doing great with no problems up until now. I was active, exercised daily and was in great shape. I can't believe how fast I started feeling crappy. My labs for my kidney function are still good, but I fear if my body's ability to control my blood pressure is compromised, I will loose this kidney. I am panicked and scared beyond words. Thanks for listening.

[mrsD]

Welcome to NeuroTalk.

What anti-rejection drugs do you take? Some of them can
cause neuropathies.

[doublewammy]

Originally Posted by mrsD

Welcome to NeuroTalk.

What anti-rejection drugs do you take? Some of them can
cause neuropathies.

I take prograf, prednisone, and cellcept. My nephrologist does not think the they would be the cause. Thanks for the reply

[mrsD]

Here is a drug information site, that logs and collates side effect data that is reported specifically to the FDA:

http://www.drugcite.com/?q=PROGRAF

The first link is Prograf. You can click on any entry and expand that category.

Cellcept:
http://www.drugcite.com/?q=cellcept

Both of these drugs are not commonly used by many people so the numbers for them appear low. Not all reports are made by doctors either, so consider that factor also. Doctors often do not report to FDA, and that is well known.

Prednisone over time really depletes some nutrients.
Magnesium is one of them.
Also
calcium
folic acid
potassium
selenium
Vit C
Vit D
Zinc

Prednisone also can increase blood sugar and deranged blood sugars impact PN.
When you expand Prograf's reports, you will see blood sugar impact listed also. So it would be a good idea to follow your
HbA1C readings and perhaps test yourself with a glucose monitor now and then.

The fact that you suddenly don't feel well, may be due to impaired glucose utilization. That can happen to ANYONE but it is also a factor in post transplant renal recipients .
https://docs.google.com/viewer?a=v&q...LW5R1J6uNyiaHA

So getting your blood sugar monitored may be a good idea for you, as well as avoiding high carb, sugar consumption. Many PNers feel much better when they avoid sugar and white carbs.

[doublewammy]

Thank you very much for the link. I am going to read it throughly. Of course I can't be sure, but I don't think it is from the meds. My nephrologist has never seen this except with his diabetic patients. I am on low dose of everything. My mag. did drop slightly and I started on mag. which took care of the problem. My labs are checked every 2 months. My blood glucose and all other labs have been normal except for mag. and vit. e. which are were corrected as soon as they began to drop. My last labs were the beg. of this month. They were perfect. I am thin and eat well. Blood sugar has never been a problem. I was not on dialysis long enough to cause nerve damage. To be honest I think it was from a surgery I had. I need to talk to the doctor about that before I comment further, but I feel it in my gut that is what caused this. As I mentioned I have not had the nerve testing yet, but I fear this is autoneuropathy. I besides my feet, hands, legs and arms, I have tingling in my lip and neck. I have digestive issues. Heating issues, and last night when I was sleeping it felt as if my breathing was off. I am hoping to hear something positive, because I am scared beyond belief. Thinking back, some of my symptoms have been there for a least a year, but didn't recognize them for what they were. They have just gotten worse the last few weeks. Thank you to those that have replied. I appreciate it more than you know. I am calling my neuro to get my blood results today. I expect them to be normal as he didn't call me. I wan't to see if they can get me in earlier for the nerve test.