PKD Question- Numbness

[jojosmommy]

I have PKD, and my cysts are VERY large!  On my last sono in 2008, my kidneys were too big to measure.  Now since I started dialysis about 14 months ago, I've slowly been gaining numbness in my feet.  The neph put me on neurotin (sp?), a nerve medication.  So that helped with the tingling sensation that was driving me crazy, but the numbness is still there.  So I asked him to refer me to a podiatrist.  I thought maybe he might have some insight.  He didn't have any clue!  After X-rays and an MRI of my feet, there is still numbness.  The podiatrist said the only thing he would do to treat it was to put me on the same meds my neph already had me on.  I guess that means I'm stuck with numb feet.  No one seems to know why they are numb, or what to do about it, so they are just going to send me on my way and let me live like this. 

My question is this... could the numbness in my feet be caused by a cyst on my kidneys pressing on my spine?  I hate to even admit it, and maybe it's from the meds I'm on, but I feel like I"m loosing feeling in other areas as well.  It's not the irritating numb feeling like in my feet, but it is a mild loss of sensation on my legs, sometimes my hands/arms. I've been thinking about going to a chiropractor to see if an adjustment would make any difference, but with my cysts so large, I'm not sure a chiropractor would touch me.  Any thoughts?

[justjen321]

Hi jojosmommy -

Are you by any chance diabetic, also?

Jen

[Des]

this is just a thought.....

Usually numbness is caused by a narrowing of the veins in the folds of you legs. (behind your knee) This can be corrected by having a stent put it.


If your feet are blue/grey in colour it indicates that the blood are not reaching the feet or that the blood have a problem in flowing back up to the heart. An indication of this is swelling of the feet or foot.  This is corrected by wearing medical stockings.

Note that this is not medical advise but just a thought and things I've seen in my unit.

Hope this helps

[Cordelia]

Maybe you have neuropathy like I do.  I have the same problem and I'm not diabetic.

I was told that once I got a new kidney, my neuropathy should reverse but that nerve damage is harder to reverse after 3 years.

My creatine is still high ......once a new kidney comes, the toxins won't be floating around as bad in my body and that's why I have neuropathy, it's from my kidney failure.

My feet are usually cold, numb and have a prickly, tingling feeling. I've had it for a year.

I wear $200 shoes and $400 pair of orthotics on my feet and I still am in pan.

[jojosmommy]

Thanks for the thoughts guys!  In reply:

No, I'm not diabetic, not even close.  I do have a DVT (which is a major blood clot) in my left leg which has caused me some severe swelling issues in my left foot in the past, but I don't have swelling now.  I have had to wear some compression stockings in the past as well, but when I went to the podiatrist he said that my blood flow seemed to be fine.  AND the numbness is in both feet, not just my left.  Now, the neuropathy sounds like a real possibility.  I just don't really understand why my nephrologist couldn't have come up with that as a diagnosis.  He just sort of scratches his head and acts like he's never seen any such thing before and doesn't get it.  He's a young doctor.... so he's probably clueless. 

Cordelia: Are you currently on dialysis?  My numb feet started about 6 months into dialysis.  I have the same symptoms... cold, numb and a prickly tingly almost bur ning sensation. Sometimes it's so bad after dialysis that I can't hardly go to sleep at night (I'm on 3rd shift so I pretty much come home and go straight to bed).  The podiatrist pretty much said that special shoes was all he could do for me, but after talking to some family members about their orthotics and how they didn't really help, I chose not to bother. 

[Cordelia]

Hi Jojosmommy,           I have been on dialysis since Aug of 2010. My neuropathy developed in October of 2010, within 2 months of starting D.

I also have PKD. My cysts are pretty big too.   I had forgotten to mention that. It first started in my toes and it spread to my feet. My transplant doc said it will be harder to reverse it after 3 years of nerve damage. I'm already heading into year two. My orthotics, well, I don't know if my feet would be worse off if I wasn't wearing $600 on my feet.

My docs think its from the renal failure, the toxins. I am not diabetic either. It's beyond frustrating. I know how you feel. It's not as bad in the am after getting up in the am and as the day draws on as I'm more on my feet, it's worse. My husband rubs them at night for me.

I'm able to handle the pain, I've gotten used to it, but the cold is beyond annoying, they go from severe cold feeling like ice and I literally put my feet on my husband's torso, with his permission of course       at night to get the heat sinking into my skin.........oh, when I excercise or am walking around a lot or standing on my feet a lot, my feet go hot and pink and burn like fire. Then, I shed my socks and walk on my ceramic tiled floor to get them to cool down. Then, they go cold again. It's a never-ending battle, really, and it's annoying as heck. I refuse to take meds because I suffer from side effects terrible from meds and I'm not willing to put up with that aggravation of that so I just live with it.

I also suffer from plantar fasciitis of the heel which is constant heel pain and the orthotics do help a bit in that department. I also have a very high arch in my feet which doesn't help the situation.

I had difficulties getting to sleep in the beginning too, it was so bad I had a hard time getting to sleep because of the tingling. Now, I am able to get to sleep, the pain is no different, I guess I'm just getting used to it that it's a part of "me"

If you ever want to vent, feel free to PM me.

You know what? I went to a neurologist. That kind of doctor diagnosed me with it. I was glad someone started listening to me. None of my nephrologists knew either. When I talked to my neph in that first month I noticed my toes were going numb, he was absolutely clueless.

I know just how you feel     

[Cordelia]

I also forgot to mention that when my husband lets me put my feet on his torso, my feet  feel like they are literally 'thawing' from having been frozen in sub-zero temps and coming into a warm house.  You know how you get that feeling in your hands in mits when you come inside and they're so cold from the outside?    It's the most bizarre feeling, real freaky.   

My recommendation to you.....perhaps go and see a neurologist. Mine was the most helpful.

One of my nephs said if I were to do home hemo, it would likely disappear because the toxins would not build up as bad between treatments. However, I am not able to do home hemo at this time.  Currently, I do 3 times a week in center, 4 hrs a time.