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Author Topic: Losing Feeling In Feet  (Read 5127 times)
KidneySinger
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« on: July 22, 2014, 09:15:08 PM »

I have been gradually losing my feelings in my feet.  Sometimes there is a burning sensation and I take a lot of Neurotin to help with the nerve pain.  Interestingly enough, I do not have diabetes as this is common the get Nuropathy.  It seems to be more than that.  I can't feel my toes anymore and it seems to be gradually effecting my feet up to my shins.  Any suggestions?
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3rd generation of Alports Syndrome: 1st generation: 4 uncles died in 20's - next generation: 2 uncles transplanted at 40, 1 died from cancer as result of rejection medication, other still alive at 65 with 20+ year transplant from sister (a carrier of Alports) but mulitple cancer surgeries through the years...looks like he is 85 years old.
1961: Blood and Protien in urine since birth
Doctors telling me kidneys would fail - every year for 50 years now! No hearing loss, just ringing
(Really think ace inhibitors and beta blockers since high school helped my surprising longevity - if you are NOT on an ace inhibitor, please ask your doctor why)
2012: GFR: 18 at present - on transplant list but they are going to have to convice me after seeing my uncles.
Preparing for dialysis
Younger brother on dialysis now for 2 years
Fistula Surgery at Mayo Clinic: failed
Going in for 2nd attempt at a fistula with different doctor - different vein
9/7/12 2nd attempt at fistula - WORKING! Mayo ruined 2 veins and St Vincents got one working!
Need additional surgery when fistual matures to bring closer to the skin.
GFR 17 - so plenty of time
WOW...just when I thought I had plenty of time - my GFR dropped to 13 in a month - guess I better get that fistula moved forward.
Moved it forward and have a thriving...thrilling fistual...BUT
Just when I did all that, I decided to go the PD route...so glad I did.
Now do PD every night and all seems to be going very well...for about a year.
Now on hemo dialysis at Mayo Clinic Jacksonville
Every Mon Wed and Friday for 4 hours at 400 pump speed.
Its really not that bad.....
amanda100wilson
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« Reply #1 on: July 23, 2014, 08:15:28 AM »

Neuropathy is not confined to those with neuropathy.  Nonetheless, I would definitely get it checked out to make sure that there is nothing else that could be responsible fir your symptoms.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
jeannea
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« Reply #2 on: July 23, 2014, 08:33:04 AM »

I think you really need to see a neurologist. This isn't normal.
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Joe
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« Reply #3 on: July 24, 2014, 07:19:21 PM »

That's what happened to me, but fortunately it stopped with my feet. Neph told me it was Renal Neuropathy. Still there after my transplant and the team is telling me it will likely be there for the rest of my life.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
Charlie B53
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« Reply #4 on: August 07, 2014, 06:08:39 PM »


Do you have any circulation problems in your feet and legs?

Swelling/edema?

I've had both.  Reduction in circulation caused by plaque in the iliac arteries, greatly improved with placement of stents on both sides.

I have some minor nerve damage, some tingling, small numbness.  Generally not much damage for what I've put my feet through.

Used to have terrible swelling in both legs.  From the toes all the way up into the lower thighs.  The lack of blood pressure from the restricted arteries prevented blood from pushing back up and out of the legs.  Without the very tight compression hose  both legs would swell so big and tight that the skin would look clear and glassy.  The clear sera would leak thru the skin and run down my shins, often leaving a sore about 1 1/2 inches wide and up to 5 inches down the shin.  Scabs would form, taking off the socks the scabs woiuld be more or less glued inside and peel off, making the whole area bleed.  Occasionally one would get poussy (Sp?) infected, and I'd spend a few days in the hospital.

Since I started PD little over a year ago there has been NO swelling.  Other than a tiny amount if I've eaten a salty meal.

Dr's blame my smoking.  I blame mostly poor diet and almost total lack of any aerobic exercise.  I was strong, almost a monster.  Lot of heavy lifting, but very slow paced, careful exertion so as not to tear muscles.  Outside sex, never raised my heartbeat.  That's not a good thing.
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LisaBart
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« Reply #5 on: August 08, 2014, 04:22:37 PM »

My husband does not have diabetes either but does have peripheal neuropathy (sensory nerves) which was confirmed via a sural nerve biopsy (taken from ankle)...the nerve appeared like a sausage does where the end is clamped...the messages take a long time then to get to the brain so delayed messages and heightened sensitivity until losing feeling...and yes, burning, tingling etc
not reversible and now has lost feeling to above the knee...1999-2014 he is now at 7% kidney funtion and not yet on dialysis (BUT) has finally said he may be by next month!!
He still has plenty of blood circulation which is a good thing,( and no real swelling,)hopefully yours is good too.  My husband has learned to live with it, but please keep an eye on your feet for any damage.
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Karlise13
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« Reply #6 on: August 14, 2014, 11:25:09 AM »

Lipoic acid is a supplement that may be helpful for neuropathies....in that it helps protect the myelin sheath around the nerves. I don't think it can reverse it, but I think it can help protect what is left.
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komomai
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« Reply #7 on: September 19, 2014, 11:05:12 AM »

Like everyone here mentioned keep an eye on your feet.  I have diabetics and right after coming back from vacation in Hawaii, I noticed my right foots big toe starting to turn a darker color.  So I'm sitting in my hemo chair, watching as my toe got blacker and blacker, finally the doctors referred me to a cardio doctor who did an angioplasty procedure on my right leg, prior to that I had a CT scan and it showed heavy calcification build up in both legs.  Well after 2 attempts the doctor said out of the 3 main arteries down my leg the one on top was completely blocked, the middle one was okay but very small veins, the bottom of my foot they were able to put some stints but after an hour it collapsed.  So they said so sorry but there was nothing that they could do, and now 3 of my toes were starting to turn black and eventually became mummified.  It was at this point that my Kidney doctor suggested a hospital up in Chiba prefecture in Japan and to see a Dr. Misume who is one of 3 surgeons in the world who does angioplasty using a rotor blade drill, kinda looks like a tiny dremel bit he told me he might be able to help me and admitted me to his hospital which was a year old.  I arrived on Saturday and on Monday he did the procedure, after the procedure he said he cleared as much as he could, but looking at my feet he said I would have to lose something.  He also noticed some blockage on my left side of the heart so he scheduled  me for another one on Friday, I asked him to also run down my left leg to clear it up.  No problem, he's very quick as he bounces between 6 operating rooms to do the angioplasty.  The second surgery took about a hour.  He then said we were free to go back to Okinawa, to do my right foot, but he said if only I had come in a few months earlier he could have saved everything.  Got back to Okinawa and discussed with the surgeons where to cut they wanted above the ankle but I said whoa, look at the back half of my feet they look like there's circulation going on there, well he said it's a 50/50 shot, I said lets go for it, but I told him while I was knocked out if it looked real bad to go ahead and do the above ankle amputation.  Woke up with half a foot and I am now back at work, still have to use a wheelchair and crutches and because my circulation is poor it's taking a while to heal.  On a good note the wife and I are pushing ahead with our in center training to do home hemo.  Target date is Oct. and I can't wait.  Sorry for the long story, but being in the hospital from April through August is not fun and yes Japanese hospital food sucks.

So yes, take care of your feet. :thumbup;
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iolaire
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« Reply #8 on: September 19, 2014, 11:10:34 AM »

So yes, take care of your feet. :thumbup;
Sorry to hear your story, but glad to hear that you found some options to improve things in the leg. 

A gentleman across from me in the center seems to be going through something similar, but I think he might have gangrene in the foot, but its been months now and nothing really has happened other than at this point he now needs a wheelchair - it looks very rough.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Sugarlump
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10 years on and off dialysis

« Reply #9 on: October 02, 2014, 05:51:27 AM »

I lost all feeling in my feet and my hands (with painful tingling and numbness) after A MSSA infection (caught in hospital) after a femoral line replacement.
This kind of infection can do a severe amount of nerve damage, including to the heart.
After two years it is a lot better but not 100%. It affected my ability to balance and to walk, and my fine motor skills in my hands.
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
mysticnight
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« Reply #10 on: October 07, 2014, 07:42:55 AM »

Do you take a good multivitamin?  Often magnesium or the B vitamin deficiencies can cause similar symptoms.  The multi I got from the nephro isn't nearly enough to cover what I lose in dialysis.
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Sugarlump
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10 years on and off dialysis

« Reply #11 on: October 07, 2014, 11:17:31 AM »

Do you take a good multivitamin?  Often magnesium or the B vitamin deficiencies can cause similar symptoms.  The multi I got from the nephro isn't nearly enough to cover what I lose in dialysis.
Do you take your multivitamin afterdialysis rather than before?
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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