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Author Topic: Diagnosis of Neuropathy  (Read 3402 times)
Cordelia
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« on: June 04, 2011, 02:35:07 PM »
I am being tested for neuropathy. The burning, tingling feeling is mainly in my toes. I'm not diabetic. I'm on dialysis almost a year. This week I go for a second nerve conduction test, I hate that test, seriously.  ::) :(

Just wondering, for all you people who have suffered from this from dialysis, does the burning, numbness and tingling and pain in your feet go away after you have a transplant or I am I stuck with this for life even after a successful transplant? :( ???
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
jeannea
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« Reply #1 on: June 04, 2011, 05:58:56 PM »
Unfortunately, when you're after transplant you take Prograf which gave me peripheral neuropathy, pain in my toes. I was able to make it bearable with Neurontin. Now that I'm on dialysis I don't have it. Sorry.
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Cordelia
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« Reply #2 on: June 04, 2011, 06:04:50 PM »
I don't understand what you mean. Do you mean you had a transplant and DID have it and now you're on dialysis, you DON"T?
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Chris
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« Reply #3 on: June 04, 2011, 10:21:16 PM »
I really really hate that test, more pain than it's worth. Nothing like being folded, scrunched in a ball so the test can be zeroed out due to interference. :rant;
 
Since I have had neuropathy since I was 10 due to diabetes, I had it in my legs and feet. After transplant though it has gotten better. This may or may not happen with you as your body gets cleaned of toxins way better than dialysis. However there are medications now to help that were not available in the 80's (didn't care by the 90's or when working). As for Prograf, everyone reacts to it differently. I have only noticed hand trembling, not the excessive hair growth that was talked about on here, hair thining, ect.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
PatDowns
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Celebrating 60th B'Day. 12/26/15
« Reply #4 on: June 05, 2011, 12:28:49 AM »
If you are on hemodialysis, peripheral neuropathy is a symptom of being under dialyzed.  If your run time is 3.5 hours or less, try raising it to at least 4.5 and see if that helps.  If possible, longer time nocturnal would be even better since it provides an overall smoother treatment on the body.  My understanding is, while not completely reversing the problem, a successful transplant will greatly diminish the effects of peripheral neuropathy.


Quote from: Cordelia on June 04, 2011, 02:35:07 PM
I am being tested for neuropathy. The burning, tingling feeling is mainly in my toes. I'm not diabetic. I'm on dialysis almost a year. This week I go for a second nerve conduction test, I hate that test, seriously.  ::) :(

Just wondering, for all you people who have suffered from this from dialysis, does the burning, numbness and tingling and pain in your feet go away after you have a transplant or I am I stuck with this for life even after a successful transplant? :( ???
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Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
Cordelia
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« Reply #5 on: June 05, 2011, 05:15:28 AM »
I hear you, Chris! I can totally relate!

PatDowns, I arlready do 4 hrs dialysis 3 times per week and my cleareances are always what they should be and then some. If they would take anything more off me, I would cramp badly :(

I couldn't possibly sit for any longer, the 4 hours alone is a struggle since I have back problems.
« Last Edit: June 05, 2011, 05:18:40 AM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
jeannea
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« Reply #6 on: June 05, 2011, 10:00:11 AM »
Sorry I wasn't clear. I had a transplant which failed. Now that it failed the neuropathy is gone.
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Cordelia
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« Reply #7 on: June 05, 2011, 11:07:14 AM »
That's okay. I understand now. Thanks for the clarification  :grouphug;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #8 on: June 06, 2011, 03:56:34 AM »
Well, this morning I'm going for the next EMG test, I hate it, I'll be so glad when it's finally over this morning!!!! ::)
« Last Edit: June 06, 2011, 12:28:26 PM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #9 on: June 06, 2011, 12:29:01 PM »
It's over, it's over, I'm so glad it's over!  :bow; :bow; :bow; Thank God it wasn't as bad as the last time was! :2thumbsup;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
lawphi
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« Reply #10 on: June 06, 2011, 03:30:19 PM »
My husband had it after having seizures.  He had issues walking and pain for about six months.  Perfectly fine now.  It occurred after an extremely high blood pressure episode. 
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
Cordelia
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« Reply #11 on: June 06, 2011, 03:53:36 PM »
The test is over, :clap; my neuropathy is still there :banghead;

I'm glad your husband is okay, I'm glad his went away! :clap;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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