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neuropathy?
- Thread starter mmmtat
- Start date
I can't help you with personal experience, however I have had patients who have neuropathies secondary to diabetes. I can tell you that the primary treatment is a very strict range to keep your blood sugars within to prevent additional nerve damage.
Sometimes topical analgesics are used (lidoderm), Tricyclic antidepressants or cymbalta are tried sometimes, as well as gabapentin or pregabalin which are used as seizure medications as well. I can tell you that most of the TCA's and gabapentin often have side effects that some people don't tolerate at all.
Alternative therapies can include acupuncture and massage, although I don't know anyone personally or professionally who has tried these methods.
Sorry I couldn't me of more help.
Sometimes topical analgesics are used (lidoderm), Tricyclic antidepressants or cymbalta are tried sometimes, as well as gabapentin or pregabalin which are used as seizure medications as well. I can tell you that most of the TCA's and gabapentin often have side effects that some people don't tolerate at all.
Alternative therapies can include acupuncture and massage, although I don't know anyone personally or professionally who has tried these methods.
Sorry I couldn't me of more help.
I can't help you with personal experience, however I have had patients who have neuropathies secondary to diabetes. I can tell you that the primary treatment is a very strict range to keep your blood sugars within to prevent additional nerve damage.
Sometimes topical analgesics are used (lidoderm), Tricyclic antidepressants or cymbalta are tried sometimes, as well as gabapentin or pregabalin which are used as seizure medications as well. I can tell you that most of the TCA's and gabapentin often have side effects that some people don't tolerate at all.
Alternative therapies can include acupuncture and massage, although I don't know anyone personally or professionally who has tried these methods.
Sorry I couldn't me of more help.
Sometimes topical analgesics are used (lidoderm), Tricyclic antidepressants or cymbalta are tried sometimes, as well as gabapentin or pregabalin which are used as seizure medications as well. I can tell you that most of the TCA's and gabapentin often have side effects that some people don't tolerate at all.
Alternative therapies can include acupuncture and massage, although I don't know anyone personally or professionally who has tried these methods.
Sorry I couldn't me of more help.
saveferris2009
New member
Your #s are only as high as 300?
Anything above 140 is causing you damage, both to your lungs, and your nerves.
You def have diabetic neuropathy <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to say.....
Anything above 140 is causing you damage, both to your lungs, and your nerves.
You def have diabetic neuropathy <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to say.....
saveferris2009
New member
Your #s are only as high as 300?
Anything above 140 is causing you damage, both to your lungs, and your nerves.
You def have diabetic neuropathy <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to say.....
Anything above 140 is causing you damage, both to your lungs, and your nerves.
You def have diabetic neuropathy <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to say.....
Incomudrox
New member
OP you take colistin yes? Probably for years? Colistin is ototoxic and neurotoxic it could be causing it along with high BSG like that... bad mix.
Incomudrox
New member
OP you take colistin yes? Probably for years? Colistin is ototoxic and neurotoxic it could be causing it along with high BSG like that... bad mix.
I had a lot of labs done back in November for tingling in my hands and feet. I originally thought it was from the IV antibiotic I was on, so mentioned it to the doctor, and he wanted to rule out a lot of issues that could cause the problem. My A1c is 6.0, which doesn't seem high enough for sugar to be the problem.
When nothing significant was found in the lab results, he sent me to a neurologist. She did some tests and didn't find much either. However, she told me she had done some reading and discovered there have been studies showing an incidence of slightly slow nerve conductivity in some cf patients. There's no explanation for what causes it, but the good news for me is it hasn't been shown to progress in studies either--it just sort of is. That was the answer I wanted since I'm a pianist. It's nothing that's hard to live with. In fact, now that it has been going on for months unchanged, I rarely even notice it, but the idea of it progressing was scary.
I guess this doesn't really help with your obviously more severe issue, but I did think it was quite interesting.
When nothing significant was found in the lab results, he sent me to a neurologist. She did some tests and didn't find much either. However, she told me she had done some reading and discovered there have been studies showing an incidence of slightly slow nerve conductivity in some cf patients. There's no explanation for what causes it, but the good news for me is it hasn't been shown to progress in studies either--it just sort of is. That was the answer I wanted since I'm a pianist. It's nothing that's hard to live with. In fact, now that it has been going on for months unchanged, I rarely even notice it, but the idea of it progressing was scary.
I guess this doesn't really help with your obviously more severe issue, but I did think it was quite interesting.
I had a lot of labs done back in November for tingling in my hands and feet. I originally thought it was from the IV antibiotic I was on, so mentioned it to the doctor, and he wanted to rule out a lot of issues that could cause the problem. My A1c is 6.0, which doesn't seem high enough for sugar to be the problem.
When nothing significant was found in the lab results, he sent me to a neurologist. She did some tests and didn't find much either. However, she told me she had done some reading and discovered there have been studies showing an incidence of slightly slow nerve conductivity in some cf patients. There's no explanation for what causes it, but the good news for me is it hasn't been shown to progress in studies either--it just sort of is. That was the answer I wanted since I'm a pianist. It's nothing that's hard to live with. In fact, now that it has been going on for months unchanged, I rarely even notice it, but the idea of it progressing was scary.
I guess this doesn't really help with your obviously more severe issue, but I did think it was quite interesting.
When nothing significant was found in the lab results, he sent me to a neurologist. She did some tests and didn't find much either. However, she told me she had done some reading and discovered there have been studies showing an incidence of slightly slow nerve conductivity in some cf patients. There's no explanation for what causes it, but the good news for me is it hasn't been shown to progress in studies either--it just sort of is. That was the answer I wanted since I'm a pianist. It's nothing that's hard to live with. In fact, now that it has been going on for months unchanged, I rarely even notice it, but the idea of it progressing was scary.
I guess this doesn't really help with your obviously more severe issue, but I did think it was quite interesting.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jana</b></i> I had a lot of labs done back in November for tingling in my hands and feet. I originally thought it was from the IV antibiotic I was on, so mentioned it to the doctor, and he wanted to rule out a lot of issues that could cause the problem. My A1c is 6.0, which doesn't seem high enough for sugar to be the problem. .</end quote>
Be very careful about making conclusions about CFRD from an A1c.
It's an average - meaning if you have high highes, and low lows, the average can come out just fine.
Doing a week or two of 2 hour post mean blood sugar tests are significantly more accurate than A1c.
Be very careful about making conclusions about CFRD from an A1c.
It's an average - meaning if you have high highes, and low lows, the average can come out just fine.
Doing a week or two of 2 hour post mean blood sugar tests are significantly more accurate than A1c.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jana</b></i> I had a lot of labs done back in November for tingling in my hands and feet. I originally thought it was from the IV antibiotic I was on, so mentioned it to the doctor, and he wanted to rule out a lot of issues that could cause the problem. My A1c is 6.0, which doesn't seem high enough for sugar to be the problem. .</end quote>
Be very careful about making conclusions about CFRD from an A1c.
It's an average - meaning if you have high highes, and low lows, the average can come out just fine.
Doing a week or two of 2 hour post mean blood sugar tests are significantly more accurate than A1c.
Be very careful about making conclusions about CFRD from an A1c.
It's an average - meaning if you have high highes, and low lows, the average can come out just fine.
Doing a week or two of 2 hour post mean blood sugar tests are significantly more accurate than A1c.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> Your #s are only as high as 300? Anything above 140 is causing you damage, both to your lungs, and your nerves. You def have diabetic neuropathy <img src=""> Sorry to say.....</end quote>
This made me laugh, only because I agree with you.I probably worded that poorly. I've been complaining to my endo that I am not in good control, and would like to do something else (Right now I only take novolog with meals), and she keeps telling me I'm "Doing Great" and numbers like mine are "to be expected".
This made me laugh, only because I agree with you.I probably worded that poorly. I've been complaining to my endo that I am not in good control, and would like to do something else (Right now I only take novolog with meals), and she keeps telling me I'm "Doing Great" and numbers like mine are "to be expected".
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> Your #s are only as high as 300? Anything above 140 is causing you damage, both to your lungs, and your nerves. You def have diabetic neuropathy <img src=""> Sorry to say.....</end quote>
This made me laugh, only because I agree with you.I probably worded that poorly. I've been complaining to my endo that I am not in good control, and would like to do something else (Right now I only take novolog with meals), and she keeps telling me I'm "Doing Great" and numbers like mine are "to be expected".
This made me laugh, only because I agree with you.I probably worded that poorly. I've been complaining to my endo that I am not in good control, and would like to do something else (Right now I only take novolog with meals), and she keeps telling me I'm "Doing Great" and numbers like mine are "to be expected".
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> OP you take colistin yes? Probably for years? Colistin is ototoxic and neurotoxic it could be causing it along with high BSG like that... bad mix.</end quote>
I do take colistin, but I have only taken 4-5 rounds in the past five years. It was originally something they used to treat an accute infection, and then earlier this year told me to start rotating it with Tobi. I have contacted my CF Clinic and they advised to me stop taking it for now, even though they don't think it's related.
I do take colistin, but I have only taken 4-5 rounds in the past five years. It was originally something they used to treat an accute infection, and then earlier this year told me to start rotating it with Tobi. I have contacted my CF Clinic and they advised to me stop taking it for now, even though they don't think it's related.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> OP you take colistin yes? Probably for years? Colistin is ototoxic and neurotoxic it could be causing it along with high BSG like that... bad mix.</end quote>
I do take colistin, but I have only taken 4-5 rounds in the past five years. It was originally something they used to treat an accute infection, and then earlier this year told me to start rotating it with Tobi. I have contacted my CF Clinic and they advised to me stop taking it for now, even though they don't think it's related.
I do take colistin, but I have only taken 4-5 rounds in the past five years. It was originally something they used to treat an accute infection, and then earlier this year told me to start rotating it with Tobi. I have contacted my CF Clinic and they advised to me stop taking it for now, even though they don't think it's related.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jana</b></i> I had a lot of labs done back in November for tingling in my hands and feet. I originally thought it was from the IV antibiotic I was on, so mentioned it to the doctor, and he wanted to rule out a lot of issues that could cause the problem. My A1c is 6.0, which doesn't seem high enough for sugar to be the problem. When nothing significant was found in the lab results, he sent me to a neurologist. She did some tests and didn't find much either. However, she told me she had done some reading and discovered there have been studies showing an incidence of slightly slow nerve conductivity in some cf patients. There's no explanation for what causes it, but the good news for me is it hasn't been shown to progress in studies either--it just sort of is. That was the answer I wanted since I'm a pianist. It's nothing that's hard to live with. In fact, now that it has been going on for months unchanged, I rarely even notice it, but the idea of it progressing was scary. I guess this doesn't really help with your obviously more severe issue, but I did think it was quite interesting.</end quote>
Thanks for sharing your story. I'm glad it hasn't progressed for you! I am very annoyed by the sensation, but wasn't thinking long term, but my husband became very concerned about it being permanent or getting worse.
Thanks for sharing your story. I'm glad it hasn't progressed for you! I am very annoyed by the sensation, but wasn't thinking long term, but my husband became very concerned about it being permanent or getting worse.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jana</b></i> I had a lot of labs done back in November for tingling in my hands and feet. I originally thought it was from the IV antibiotic I was on, so mentioned it to the doctor, and he wanted to rule out a lot of issues that could cause the problem. My A1c is 6.0, which doesn't seem high enough for sugar to be the problem. When nothing significant was found in the lab results, he sent me to a neurologist. She did some tests and didn't find much either. However, she told me she had done some reading and discovered there have been studies showing an incidence of slightly slow nerve conductivity in some cf patients. There's no explanation for what causes it, but the good news for me is it hasn't been shown to progress in studies either--it just sort of is. That was the answer I wanted since I'm a pianist. It's nothing that's hard to live with. In fact, now that it has been going on for months unchanged, I rarely even notice it, but the idea of it progressing was scary. I guess this doesn't really help with your obviously more severe issue, but I did think it was quite interesting.</end quote>
Thanks for sharing your story. I'm glad it hasn't progressed for you! I am very annoyed by the sensation, but wasn't thinking long term, but my husband became very concerned about it being permanent or getting worse.
Thanks for sharing your story. I'm glad it hasn't progressed for you! I am very annoyed by the sensation, but wasn't thinking long term, but my husband became very concerned about it being permanent or getting worse.