The good, the bad, the ugly, & who knows

[Guest guest]

I've had a change in the neuropathy in my feet & I'm unsure whether it's a good thing or a bad thing. I've written about how my feet have been cold-sensitive for the past 2-3 years. Even though they would feel warm to the touch & be nice & pink, if I didn't keep them extra warm, I would have a lot more pain. Well, in the last 2-3 months, they have become less sensitive to cold. I've been kayaking with different combos of family members 5 times in the past month or so. I used to try really hard not to get my feet wet, because they would ache so much for hours afterward. But this year I realized that even though my feet got wet the first time, they didn't hurt anymore than usual. So the next few times, I didn't even wear socks, I capsized on purpose (it's fun!), and no change. I do take dry socks & shoes to put on when we finish, but I always have. I haven't seen my neuro since this change, but I saw my podiatrist. He really didn't have an opinion. It's better in that I don't have to wear thick, heavy socks everywhere I go, even with sandals on, but I'm afraid that it means the neuropathy has worsened. I did have a doppler study of my feet about the time I noticed this change, because my feet seemed to get whiter & the podiatrist couldn't feel the two major pulses to the feet. I couldn't tell, because my fingers aren't sensitive enough anymore to feel most of the pulses. The doppler showed good arterial circulation to my feet. I don't go back to the neuro for a few months, although I'm taking my mom back in about a month. I'm trying to decide whether to call for an earlier appt. with him. What say you all?

Okay, that was the good/bad; this is the ugly (depending on your squeamishness). I've had burning pain with urination for 18 months. When it started, I had a urinary infection (UTI), which persisted for about 10 months, despite 7 courses of antibiotics, that cultures showed should have been effective. I finally had two negative urine cultures last Oct. & Nov., but still had the burning. I was put on Bactrim for suppression for six months; I still had negative cultures, so it was discontinued. Through it all the burning continued, but not every time I urinated. I kept a log for awhile; sometimes it was worse in the morning, but more often at night. I really pushed fluids without any change. I eliminated foods from my diet that are bladder irritants, without any change. I took Pyridium, which helped some, but never completely eliminated it. I was checked for vaginal infections & other possible causes. I had a cycstoscopy, which was negative except the urologist had to dilate my urethra quite a bit. He thought that the burning might improve after that. The first couple of days it was worse, understandably, then it did improve slightly. So, I just decided to live with it. Most of the time it's mild, but at least once a day it's enough to make me cringe. Now for the weird or "who knows" part. For the past 3-4 weeks, I've been feeling increased burning pain in my feet at the same time as the more severe burning with urination! But not every time! It's mostly in the evening, and the sensation in the feet seems to begin just before the burning in the urethra. I'm not straining or anything; I'm just sitting there, I have the usual neuropathic pain in my feet, then it's like I feel this burning just spread through the front half of my feet (where I have always felt the neuropathy) & immediately after, I'll start the cringe-inducing urination! I can't imagine anyway that they are connected, so I hate to even mention it to any of my doctors, but it's real! Now, if I let myself get constipated & have to strain, I'll feel more pain in my feet, but it's a different sensation. And when this burning occurs, I'm not straining. The whole thing bugs me, not knowing if it indicates anything serious, guessing that my docs are going to think I'm nuts . . . . I go back to the sarc doctor at I.U. in December, when I'll have another chest CT, PFT, and labs, including ACE. Back in March, I think, my ACE was 22, after being off MTX a year and off Pred & Imuran for 2 years. I was declared in remission. Then in June, I had some labs done at I.U. and my ACE was 62, which was actually the first elevated ACE I've ever had! When I was initially diagnosed with NS, my ACE levels were zero, but I had been on an ACE-inhibitor for my hypertension for several years. I was slightly concerned about the ACE of 62, but it's just barely elevated, so I was just going to wait until the December labs & see what it is then. Now with all this weird stuff going on, I'm wondering if I should have it done now?

I would appreciate any input, and thank you in advance.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

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[Guest guest]

I've had a change in the neuropathy in my feet & I'm unsure whether it's a good thing or a bad thing. I've written about how my feet have been cold-sensitive for the past 2-3 years. Even though they would feel warm to the touch & be nice & pink, if I didn't keep them extra warm, I would have a lot more pain. Well, in the last 2-3 months, they have become less sensitive to cold. I've been kayaking with different combos of family members 5 times in the past month or so. I used to try really hard not to get my feet wet, because they would ache so much for hours afterward. But this year I realized that even though my feet got wet the first time, they didn't hurt anymore than usual. So the next few times, I didn't even wear socks, I capsized on purpose (it's fun!), and no change. I do take dry socks & shoes to put on when we finish, but I always have. I haven't seen my neuro since this change, but I saw my podiatrist. He really didn't have an opinion. It's better in that I don't have to wear thick, heavy socks everywhere I go, even with sandals on, but I'm afraid that it means the neuropathy has worsened. I did have a doppler study of my feet about the time I noticed this change, because my feet seemed to get whiter & the podiatrist couldn't feel the two major pulses to the feet. I couldn't tell, because my fingers aren't sensitive enough anymore to feel most of the pulses. The doppler showed good arterial circulation to my feet. I don't go back to the neuro for a few months, although I'm taking my mom back in about a month. I'm trying to decide whether to call for an earlier appt. with him. What say you all?

Okay, that was the good/bad; this is the ugly (depending on your squeamishness). I've had burning pain with urination for 18 months. When it started, I had a urinary infection (UTI), which persisted for about 10 months, despite 7 courses of antibiotics, that cultures showed should have been effective. I finally had two negative urine cultures last Oct. & Nov., but still had the burning. I was put on Bactrim for suppression for six months; I still had negative cultures, so it was discontinued. Through it all the burning continued, but not every time I urinated. I kept a log for awhile; sometimes it was worse in the morning, but more often at night. I really pushed fluids without any change. I eliminated foods from my diet that are bladder irritants, without any change. I took Pyridium, which helped some, but never completely eliminated it. I was checked for vaginal infections & other possible causes. I had a cycstoscopy, which was negative except the urologist had to dilate my urethra quite a bit. He thought that the burning might improve after that. The first couple of days it was worse, understandably, then it did improve slightly. So, I just decided to live with it. Most of the time it's mild, but at least once a day it's enough to make me cringe. Now for the weird or "who knows" part. For the past 3-4 weeks, I've been feeling increased burning pain in my feet at the same time as the more severe burning with urination! But not every time! It's mostly in the evening, and the sensation in the feet seems to begin just before the burning in the urethra. I'm not straining or anything; I'm just sitting there, I have the usual neuropathic pain in my feet, then it's like I feel this burning just spread through the front half of my feet (where I have always felt the neuropathy) & immediately after, I'll start the cringe-inducing urination! I can't imagine anyway that they are connected, so I hate to even mention it to any of my doctors, but it's real! Now, if I let myself get constipated & have to strain, I'll feel more pain in my feet, but it's a different sensation. And when this burning occurs, I'm not straining. The whole thing bugs me, not knowing if it indicates anything serious, guessing that my docs are going to think I'm nuts . . . . I go back to the sarc doctor at I.U. in December, when I'll have another chest CT, PFT, and labs, including ACE. Back in March, I think, my ACE was 22, after being off MTX a year and off Pred & Imuran for 2 years. I was declared in remission. Then in June, I had some labs done at I.U. and my ACE was 62, which was actually the first elevated ACE I've ever had! When I was initially diagnosed with NS, my ACE levels were zero, but I had been on an ACE-inhibitor for my hypertension for several years. I was slightly concerned about the ACE of 62, but it's just barely elevated, so I was just going to wait until the December labs & see what it is then. Now with all this weird stuff going on, I'm wondering if I should have it done now?

I would appreciate any input, and thank you in advance.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Get the device you want, with the Hotmail® you love.

[Guest guest]

Rose,

Get on the Milk Thistle capsules and tea. That is going to detox your liver, and that should help the kidneys also. Stay on it. Water and cranberry juice-- and Milk Thistle tea-- get this stuff going thru your system.

You know lady-- I wonder how much of the foot neuropathy as well as the burning on urination is being changed with you being able to be so much more active. The good news is that the bike and all the kyaking are helping with the feet, and it could be that the nerves to the bladder and kidneys and liver are also being effected by the increase play time!!!!!!!!!!

This dear could be a good thing--and yeah, get in and make sure you aren't back in infection mode with a UT I. Don't wait to Dec.

okie dokey artichokie,

Tracie

NS CO-owner/moderatorGet a sneak peek of the all-new AOL.com.

[Guest guest]

Rose,

Get on the Milk Thistle capsules and tea. That is going to detox your liver, and that should help the kidneys also. Stay on it. Water and cranberry juice-- and Milk Thistle tea-- get this stuff going thru your system.

You know lady-- I wonder how much of the foot neuropathy as well as the burning on urination is being changed with you being able to be so much more active. The good news is that the bike and all the kyaking are helping with the feet, and it could be that the nerves to the bladder and kidneys and liver are also being effected by the increase play time!!!!!!!!!!

This dear could be a good thing--and yeah, get in and make sure you aren't back in infection mode with a UT I. Don't wait to Dec.

okie dokey artichokie,

Tracie

NS CO-owner/moderatorGet a sneak peek of the all-new AOL.com.