neuropathy?

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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mmmtat</b></i> <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
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".</end quote>

So you know why you have neuropathy, then. You know!
I'm confused as to why you wrote this thread.
You have neuropathy because you have uncontrolled blood sugars. Period. It's very textbook and straightforward.
Have you told your endo you are experiencing neuropathy? Find another endo that knows that sugars in the 300s are NOT ok and are damaging your body.
I promise you, neuropathy is going to be the least of your worries in the coming years. CFRD will make your CF progress MUCH faster if your sugars are over 140. I'm sorry to be so blunt - but your lungs are going to suffer greatly and you will die much younger if you don't get this under control.
Take care - you can do this!
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mmmtat</b></i> <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
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".</end quote>

So you know why you have neuropathy, then. You know!
I'm confused as to why you wrote this thread.
You have neuropathy because you have uncontrolled blood sugars. Period. It's very textbook and straightforward.
Have you told your endo you are experiencing neuropathy? Find another endo that knows that sugars in the 300s are NOT ok and are damaging your body.
I promise you, neuropathy is going to be the least of your worries in the coming years. CFRD will make your CF progress MUCH faster if your sugars are over 140. I'm sorry to be so blunt - but your lungs are going to suffer greatly and you will die much younger if you don't get this under control.
Take care - you can do this!
 
M

mmmtat

New member
Well I wrote the thread to get an idea of what possible treatments are, and if anyone has had success with them.

My primary care doc diagnosed it, but is referring me to neurology. He didn't want to speculate on treatments, he said to wait to see the neurologist.

I called my endo immediately and she said "Absolutely not, you might have neuropathy, but it is not from diabetes, your numbers aren't high enough for that".

I'm considering getting a different endo, as they refuse to do anything other than novolog with meals, 1:50 insulin to carb ratio. I keep bringing up the concerns that this is not working, but they keep saying I'm doing great. My a1c is 5.3, but that is a) not a good number for CFRD, and b) could be bad, since it shows my habitual problem with lows.
 
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mmmtat

New member
Well I wrote the thread to get an idea of what possible treatments are, and if anyone has had success with them.

My primary care doc diagnosed it, but is referring me to neurology. He didn't want to speculate on treatments, he said to wait to see the neurologist.

I called my endo immediately and she said "Absolutely not, you might have neuropathy, but it is not from diabetes, your numbers aren't high enough for that".

I'm considering getting a different endo, as they refuse to do anything other than novolog with meals, 1:50 insulin to carb ratio. I keep bringing up the concerns that this is not working, but they keep saying I'm doing great. My a1c is 5.3, but that is a) not a good number for CFRD, and b) could be bad, since it shows my habitual problem with lows.
 
H

Havoc

New member
HbA1c is not a very reliable indicator of average blood sugars in CF patients. Our RBC tend not to live as long as normal and thus provides a false low.
 
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Havoc

New member
HbA1c is not a very reliable indicator of average blood sugars in CF patients. Our RBC tend not to live as long as normal and thus provides a false low.
 
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Jana

New member
Okay, I checked my blood sugar after meals yesterday. Two hours after dinner, which was full of carbs, my sugar was 110, and I think that's good. However, this morning before I ate (I never ate anything else after dinner last night), it was 116. That seems strange to me, but I'm pretty clueless about sugar issues. Is that normal?
 
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Jana

New member
Okay, I checked my blood sugar after meals yesterday. Two hours after dinner, which was full of carbs, my sugar was 110, and I think that's good. However, this morning before I ate (I never ate anything else after dinner last night), it was 116. That seems strange to me, but I'm pretty clueless about sugar issues. Is that normal?
 
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saveferris2009

New member
Did you take the dinner sugar 2 hours after your 1st bite, or two hours after you finished dinner?

Your fasting is a bit high..... you might benefit from some basal insulin.
 
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saveferris2009

New member
Did you take the dinner sugar 2 hours after your 1st bite, or two hours after you finished dinner?

Your fasting is a bit high..... you might benefit from some basal insulin.
 
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Hail2Pitt

Guest
I was just diagnosed with peripheral neuropathy a fewweeks ago.My neurologist isn't exactly sure why I have it - I don't have CFRD, and though I take antibiotics frequently for M. Abscessus, none of the ones I takehave been reported to cause nerve damage. He believes it could be genetic, since my mom has neuropathy as well, but for now the jury is out.

He has started me on a low dose of gabapentin, and it's already helping my symptoms.The main side effect I've been struggling with is tiredness, but over time this side effect supposedly subsides and I have definitely noticed that it's decreasing for me.I think neuropathy is indeed permanent and likely gets worse, but honestly I wouldn't get too worked up about that. My mom's case is severe, but she and her neurologist have her symptoms well under control with Lyrica as well as various stretching and strengthening exercises.

My neurologist showed me a study that was published a while back in the Irish Journal of Medical Science, where peripheral nerve dysfunction was found in 62% of the adult CF patients in the study. My CF clinic wasn't aware of this study, so I sent it to them and am planning to talk about it with them at my next appointment. There's no doubt CFRD causes neuropathy in some patients, but there seems to be more to it than that.

Jim
 
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Hail2Pitt

Guest
I was just diagnosed with peripheral neuropathy a fewweeks ago.My neurologist isn't exactly sure why I have it - I don't have CFRD, and though I take antibiotics frequently for M. Abscessus, none of the ones I takehave been reported to cause nerve damage. He believes it could be genetic, since my mom has neuropathy as well, but for now the jury is out.

He has started me on a low dose of gabapentin, and it's already helping my symptoms.The main side effect I've been struggling with is tiredness, but over time this side effect supposedly subsides and I have definitely noticed that it's decreasing for me.I think neuropathy is indeed permanent and likely gets worse, but honestly I wouldn't get too worked up about that. My mom's case is severe, but she and her neurologist have her symptoms well under control with Lyrica as well as various stretching and strengthening exercises.

My neurologist showed me a study that was published a while back in the Irish Journal of Medical Science, where peripheral nerve dysfunction was found in 62% of the adult CF patients in the study. My CF clinic wasn't aware of this study, so I sent it to them and am planning to talk about it with them at my next appointment. There's no doubt CFRD causes neuropathy in some patients, but there seems to be more to it than that.

Jim
 
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saveferris2009

New member
I get the feeling that undiagnosed/undertreated CFRD is extremely common in our community.

We do an OGTT, and if it's normal, we forget about it until our next OGTT the following year. Even though OGTT's can give false negatives.

For this reason, I'm not surprised about the high neuropathy rate in that study - CFRD rates increase quite rapidly after age 30.
 
S

saveferris2009

New member
I get the feeling that undiagnosed/undertreated CFRD is extremely common in our community.

We do an OGTT, and if it's normal, we forget about it until our next OGTT the following year. Even though OGTT's can give false negatives.

For this reason, I'm not surprised about the high neuropathy rate in that study - CFRD rates increase quite rapidly after age 30.
 
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Hail2Pitt

Guest
I couldn't find free access to it online, but I did scan the hard copy that my doctor gave me. I can certainly email it to you if you'd like.
 
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Hail2Pitt

Guest
I couldn't find free access to it online, but I did scan the hard copy that my doctor gave me. I can certainly email it to you if you'd like.
 
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