I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Sunny on May 19, 2008, 04:41:16 PM
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I'm always finding out about new things people with ESRD can get.
Uremic neuropthy is the latest one that has come to my attention. I have been having intense pain in my feet at night when I lay down for sleep.
It is that "pins and needles" feeling along with a heat in the feet sort of sensation. Internet research confirms low GFR if you are
pre-dialysis or inadequate dialysis will lead to uremic neuropathy. Things I've read also suggest problems sleeping, difficulty in
concentration and thought process, general achiness, and even asymmetry in facial features can all result from uremic neuropathy. All this I have.
Toxin build up and water retention on a cellular level can create all sorts of neurologic problems. The thing is, my renal doctor has not
prepared me for any of this. She never tells me about long-term problems from ESRD. She tells me my "numbers" look fine so I
should be doing fine. I keep thinking," What else is out there I don't know about?" There should be a class given for ESRD patients if they want
to learn about this stuff and not this "We'll worry about it when it happens" attitude. I learn more here and on the Internet than I do anywhere.
What else can you tell me about Uremic neuropathy? How does it effect you and what can you do about it?
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My doctor too.
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90% of what I have learned is from patients. I hope you keep asking questions because it sounds like you need to manage your care and not rely on that doctor too much.
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How strange , i have just been diagnosed with this !! Despite telling my doctors about symptoms like feeling red hot and restless legs , no sleep etc ..all i was met with was a shrug of the shoulders , till i found one doctor who told me about uremic neuropathy ! Her answer to this ..yup more tablets !! not quite what i wanted ! Its seems there is nothing you can do to prevent it happening , it just goes with the package , at the moment im trying a few new tablets ..just in case ..but no change so far !
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Thanks. It really helps to know what others are going thru. I've had mild episodes of this too. It's comforting to know it all just part of ESRD.
-Devon
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This shows how profoundly misleading it is to assume that because the nephrologists regard your laboratory values as acceptable for a dialysis patient, that means that you are doing as well as a healthy person who is not on dialysis. Dialysis itself brings more diseases with it than I can list, from osteoporosis to neuropathy, from accelerated arterio- and atherosclerosis to rhabdomyelosis and increased risk of Alzheimers, so never assume you are doing all right by staying on dialysis.
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Diabetic neuropathy is exactly the same thing. I'm sorry to hear about this! :cuddle;
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Today I brought the issue of neuropathy up at my renal doctor appointment.
My creatinine is 3.0, my GFR about 19%,my Hemo 12.4. Taking this into account, yes I am bound to have uremic neuropathy.
Solutions to try: we will increase my HBP meds yet again, drink a lot more water, have me start prescription renal multi vitamins, and take vicodin for the pain.
Obviously if things get worse, the unspoken truth is that I need to get ready for dialysis or push harder for that transplant.
None of which I really feel like dealing with. These things are worth trying. However, I have noted here that even with dialysis, neuropathy can still occur.
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This shows how profoundly misleading it is to assume that because the neurologists regard your laboratory values as acceptable for a dialysis patient, that means that you are doing as well as a healthy person who is not on dialysis. Dialysis itself brings more diseases with it than I can list, from osteoporosis to neurologists, from accelerated arterio- and atherosclerosis to rhabdomyelosis and increased risk of Alzheimers, so never assume you are doing all right by staying on dialysis.
i certainly don't assume i am well. i am doing well for a dialysis patient, but i am still sick, very sick, something that people without kidney disease don't understand. luckily something both my neurologist and primary care doc fully understand. if my neph just shrugged and said we'd cross that bridge when we came to it, i'd be looking for a new doc!
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Mine went away when I started dialysis.
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Beyond the dumb medical interventions often recommended, consisting of medications which simply numb the pain of neuropathy but do nothing to heal it, there are some positive things that can be done to deal with neuropathy. First there is benfotiamine, an extremely safe drug for treating neuropathy which has been available over-the-counter in German pharmacies since the 1960s. Taken in adequate amounts this can stop the progression of neuropathy and even reverse established neuropathy. Strangely, although repeated studies have confirmed its nearly miraculous effects since the initial study published in NATURE: MEDICINE in February, 2003, there has been little interest in the drug in North American medicine, always known for its mindless conservatism. Benfotiamine can now be easily obtained everywhere from various websites.
There is also a device, the Rebuilder, which gives electrical pulses to the body to improve neuropathic symptoms. I used it everyday on my feet for three months and have had no neuropathic symptoms since then, though I use it now about once a month for insurance. The only drawback is the expense, which is about $600. This can be obtained via the internet.