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Author Topic: Legs not working right - UREMIA?  (Read 5821 times)
swramsay
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« on: January 01, 2009, 10:13:50 AM »

For the last several weeks, I have had problems with my legs. It seems like the connection from my brain to my legs is short circuiting somehow. I have to 'think' every step sometimes. It seems worse after I have been sitting for a while and when I get up from bed. I have only been on dialysis for 4 months. This symptom is disturbing to me because I am normally very physically adept. I also have noticed at the same time, it is difficult to chew in the sense that my bite doesn't close properly. Writing is a bit off as well.

Is this all related to uremia? Any way to fix this? It's quite disturbing. I hope this isn't the beginning of a permanent decrease in the quality of my physical life.

« Last Edit: January 01, 2009, 11:03:48 AM by swramsay » Logged

JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
Chris
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« Reply #1 on: January 01, 2009, 03:33:17 PM »

I do not have an answer, but I have seen other post you made. Seems you are getting worse and your new nephrologist is not doing a damn thing for you with a reluctant staff who gives a crap about anyone. Seems they are in the wrong profession, or is it the right one since so many are like this? Hopefully Bill or someone else can point you in the right direction for a better doctor before things get worse.

Also I hope someone has some input for you here.
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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?
BigSky
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« Reply #2 on: January 01, 2009, 05:05:24 PM »

Could be from high potassium.  How are your levels?
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swramsay
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« Reply #3 on: January 01, 2009, 05:59:07 PM »

Potassium was 5.9 on Dec 23 (down from 6.3 the week prior). Not too high. Phosphorus is 8.5. I have recently added a second binder hoping this helps. I must be doing something wrong in my diet but I thought I was being reasonable. Is uremia associated with potassium or phosphorus levels?

I am very new to all the research and so much I don't know yet. I'll get there eventually. I wonder if some people are more suseptible to uremic symptoms than others. I also wonder if I notice it more because I am going on dialysis after a sudden kidney failure (surgery) after having good health and normal kidney function. Others with CKD probably have declining health and symptoms over a period of time making the changes less drastic.

Thanks for the info.

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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
Chris
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« Reply #4 on: January 01, 2009, 06:09:13 PM »

Doing some searching, here's the first thing I found. It's a little helpful, but does not explain fully your situation.

http://www.encyclocentral.com/23139-Uremic_Poisoning_Or_Uremia_Acute_Renal_Failure_Causes_Lethargy_Headache.html

Uremic Poisoning happens when the Glomerular Filtration Rate is as low as 50% below to the normal, especially in kidney dialysis patients. Glomerular Filtration Rate reduces due to excessive accumulation of urea and creatinine in blood. Only the high levels of serum urea and serum creatinine are counted in respect of this. But some other poisonous nitrogenous proteins present in blood serum in little amount may result the worst condition.

Uremic Poisoning can produce symptoms like lethargy, headache, confusion, vomiting, convulsion and even coma. It can create certain pathological disorder like stomatitis, pneumonia, endicarditis, gastritis, eclampsia, and pruritus. It can also create fibrinous perucarditis.

High protein diet, increased proteins break down, gastrointestinal bleeding and tetrecyclines or corticosteroids drugs can cause high production of serum urea, the main catalyst for Uremic Poisoning. Reduced excretion of urea also causes high serum urea level. In cases of hypotension or cardiac failure blood flow through kidneys get reduced. Any urinary out flow obstruction or dehydration also can restrict urea removal.

There are some easy symptoms that help to detect Uremic Poisoning earlier. Patients with uremia become so much sleepy with loss of memory and burning feeling in legs. They may have a loss of appetite with reduced weight and malnutrition. They can have an inflammation in cardiac muscle along with breathing problems. Their blood sugar level gets too much increased. They may have a very irritating itching problem with pale, yellow skin. There are so many more symptoms to describe. Uremic poison
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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?
Chris
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« Reply #5 on: January 01, 2009, 06:13:10 PM »

Another website has more information, this is an abstract.

http://emedicine.medscape.com/article/245296-overview

Anemia

Anemia-induced fatigue is thought to be one of the major contributors to the uremic syndrome. Erythropoietin (EPO), a hormone necessary for red blood cell production in bone marrow, is produced by peritubular cells in the kidney in response to hypoxia. Anemia associated with renal failure can be observed when the glomerular filtration rate (GFR) is less than 50 mL/min or when the serum creatinine is greater than 2 mg/dL. Diabetic patients may experience anemia with a GFR of less than 60 mL/min. Anemia associated with chronic kidney disease is characteristically normocytic, normochromic, and hypoproliferative.

In the setting of CRF, anemia may be due to other clinical factors or diseases, such as iron deficiency, vitamin deficiencies (eg, folate, vitamin B-12), hyperparathyroidism, hypothyroidism, and decreased red blood cell survival. Iron deficiency, which may occur as a result of occult GI bleeding or frequent blood draws, should be excluded in all patients. Elevated PTH levels are thought to be associated with marrow calcification, which may suppress red blood cell production and lead to a hypoproliferative anemia. Parathyroid-induced marrow calcification tends to regress after parathyroidectomy.


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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?
swramsay
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« Reply #6 on: January 01, 2009, 07:20:32 PM »

Thank you Chris. The EMedicine article is very good. I actually printed that out to discuss with the nephrologist who I've been trying to meet with since the end of November. Unfortunately, she's not available until the end of January. That article mentions platelet problems which I have - which has been a mystery since beginning dialysis in September.
I also want to ask her about paracalcitol instead of calcitriol because I have elevated phosphorus with upper end calcium levels (9.5).

My symptoms sound like uremia including declining eyesight and a calcium deposit (at least that's what I think it is) that has appeared on my eye this past week.

The treatment is dialysis. Ha. I hope that once I begin daily home dialysis, many of these symptoms will go away. I find it hard to believe that these symptoms are rare among dialysis patients.
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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
Joe Paul
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« Reply #7 on: January 01, 2009, 11:59:59 PM »

Before I was diagnosed with kidney failure, my legs hurt and felt as though they weighed 100 pounds each. I would have to stand up, then take some time to get the legs going. Steps were the worst for me. After blood testing, come to find out my calcium level was 15.9. When I got that down to a normal level through diet, the pain and heaviness in my legs eased, and finally went away. I never did have high potassium levels, which is what I hear most fellow patients associate the pains in legs and arms with.
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"The history of discovery is completed by those who don't follow rules"
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swramsay
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My son, Scotland, is my heartbeat.

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« Reply #8 on: January 02, 2009, 09:30:21 AM »

Yes, that's similar to what I experience although there is no pain. Just heaviness and not working right. My calcium is 9.4 which is within the limits. I still wonder if my sudden introduction to kidney failure due to surgical removal and dialysis is the reason I am experiencing some of these symptoms more acutely. Perhaps even though some of these labs aren't terribly out of range, there is enough change from my counts prior to kidney removal 4 months ago to cause problems. Just a thought.

Glad to hear your symptoms went away and thank you for answering.
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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
Lucinda
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« Reply #9 on: January 02, 2009, 12:07:26 PM »

I have the heavy legs and I am a bit dyslexic with some of my movements but I am pre-dialysis.  My neph told me that it is not unusual and the symptoms will probably cease after a few months on dialysis but she said it can take up to six months for your system to get used to the dialysis so you may still suffer the symptoms for a while.  I found it worse a couple of weeks ago when my potassium skyrocketed and then when it was back to normal the heaviness wasn't so bad but it was still there.  I just feel rather uncoordinated and clumsy.  I have very low calcium so I am sure that is not the cause of the heaviness.  I hope it gets sorted soon.  xx
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Rerun
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« Reply #10 on: January 02, 2009, 02:07:37 PM »

Binders bind Phosphorous... not Potassium.  Potassium is high at 6.0.  Since you are new to dialysis you are more sensitive to high levels of Potassium.  Watch your high potassium foods like dairy (milk) and fresh fruits and veggies and black beans.  Those are the high ones that I like and oranges and bananas and potatoes .... ok I'll stop.

A symptom of high potassium is weak mussels in your legs etc.... and that is why it is so important not to have too high of potassium... your heart is a mussel.  Too high of a potassium can STOP your heart.

                                                                                                 :waving;

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swramsay
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My son, Scotland, is my heartbeat.

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« Reply #11 on: January 02, 2009, 08:14:10 PM »

Fresh fruits and veges? I know potatos, bananas, apricots, oranges. I do like my grapefruit and tangerines. I thought I was ok with a salad 5-6 days a week with oil and vinegar. Not so?
I am still learning and so much I don't know. I found out about chocolate after Halloween and pumkin pie after Thanksgiving.   :banghead;
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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
Chris
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« Reply #12 on: January 02, 2009, 11:22:09 PM »

If I remember right, kayexelate (sp?) ( poly ....something not sure I have any left) was given to help lower potassium at home. It taste nasty, so if you can, get your pharmacy to add flavor to help it a little. There were two kinds, premade solution and the dry mix you add to water. Your nephrologist will know or should know about this stuff. You made need to stay around a bathroom if you take this stuff and invest in paper stock ::)
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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?
RightSide
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« Reply #13 on: January 03, 2009, 09:34:37 PM »

For the last several weeks, I have had problems with my legs. It seems like the connection from my brain to my legs is short circuiting somehow. I have to 'think' every step sometimes. It seems worse after I have been sitting for a while and when I get up from bed. I have only been on dialysis for 4 months. This symptom is disturbing to me because I am normally very physically adept....
Is this all related to uremia?

YES, I had that over a year ago, even before I was diagnosed officially with kidney failure.  And it got worse.  Eventually I started getting severe pains in my legs too.

BUT those particular symptoms weren't caused by uremia.

After I was officially diagnosed with kidney failure, the blood tests showed that I had secondary hyperparathyroidism.  My Parathyroid Hormone level was 1200 and my calcium level was "critically low."  That was causing calcium to leach out of my leg bones.  My leg symptoms have improved as my secondary hyperparathyroidism was treated.

I would suggest you have your calcium and PTH levels checked as soon as possible.
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Chris
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« Reply #14 on: January 11, 2009, 06:22:21 AM »

swramsay,
Did you get any help yet?
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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?
swramsay
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Gender: Female
Posts: 188


My son, Scotland, is my heartbeat.

WWW
« Reply #15 on: January 11, 2009, 10:36:22 AM »

Thanks for asking, Chris. I found a new nephrologist last week. He ordered some tests that I will have this week to rule out heart issues. I felt faint while in his office. He called the same day to let me know my potassium was 6.8. I started getting more informed on potassium content of foods and found out a few of the culprits that I didn't know about before. Plus, some of it is learning just how reactive I am to eating these foods - kind of like a child testing his limits I guess. I'm learning.

I asked the nurse about kayexelate. That would be a last resort treatment I guess due to the side effects.

My legs seem ok these past few days. But, I did take some vicodin for restless legs that were keeping me awake all night. Not sure how that is affecting (or helping) the other symptoms. I really don't like taking any kind of drug but I can't go without sleep either.

I am relieved to have a good nephrologist again. I can't believe I never was able to meet with the one I already left! Geez.
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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
Chris
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« Reply #16 on: January 11, 2009, 02:36:54 PM »

I'm glad your getting some help and more information. I think I haave a chart that shows what oods to avoid for potassium on one side and phosphorus on the other. It list the ones that are high and to avoid and ones that are low and exceptable. I have to find it in my bookshelf and post it.

Yeah the main side effect of kayexelate could be frequent flyer miles and the need to invest in paper products. Not to mention the nasty taste.

Hopefully the test will show nothing wrong and that it is just the high potassium.
Good Luck this week.
Logged

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?
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