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NON Diabetic Peripheral Neuropathy


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Old 04-27-2017, 08:34 AM   #1
58model
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NON Diabetic Peripheral Neuropathy

Hi all, just wondering if there are others out there diagnosed with non diabetic peripheral neuropathy? I have suffered with numbness, tingling & pain in both feet for about 8 years. In the past 6 months these same symptoms have begun to appear in the fingers of both hands.
I have been treated for this with Endep at night for a few years now, first at 10mg about 1 year ago my Neurologist increased to 50mg. She also started me on Cymbalta 60 at the same time taken in the morning. A month ago I mentioned to her that I wasn't sure the Cymbalta was having much effect? Consequently, she reduced the Cymbalta to 30mg and added Endep 25 taken early evening with Endep 50 at bedtime.
Endep at this dose is fantastic at getting me a full nights sleep, (feet pain used to keep me awake most nights).
The Cymbalta reduced by half had the almost immediate effect of a marked increase in discomfort in my feet in the evening, until the Endep kicks in.
If anyone else is battling similar issues I'd love to hear how you are handling it and what treatments you are finding helpful.

Last edited by 58model; 04-27-2017 at 08:36 AM.

 
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Old 06-01-2017, 07:05 AM   #2
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Re: NON Diabetic Peripheral Neuropathy

Hi: I am having the same symptoms for years as well. It has gotten so bad I am home from work today. I have seen a bunch of doctors and it seems that I am at the same place I was at years ago. I am taking cymbalta 60 mg, lyrica 100mg, amitriplyne 50 mg and percocets as needed. I am so very frustrated myself. I have been told to go to John Hopkins. Mine started when I partial tear in my my ankle, the pain went from one foot to both, then they began to burn. please reply. thank you have a great day.

 
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Old 08-05-2017, 06:37 AM   #3
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Re: NON Diabetic Peripheral Neuropathy

Hi...although I'm having a conflict with 2 of my doctors, the neurologist did a nerve conduction test and he diagnosed me with peripheral neuropathy and was put on Gabapentin. It began to help eith the all over pain..feet, legs, hands and arms. I have an autoimmune disease and he feels that its ehat causevmy nerve pain.

 
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Old 08-05-2017, 08:12 AM   #4
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Re: NON Diabetic Peripheral Neuropathy

Hi. I have Multiple Sclerosis and also have non diabetic Peripheral Neuropathy. I have the exact same symptoms you describe.

I have tried Lyrica, Gabapentin and other drugs, none of which work on me since mine is caused by MS and lesions in my brain. My brain neurons are shot, therefore my nerve conduction tests show all sorts of weird things going on.

Since none of the drugs work for me- I suffer on a daily basis. I have noticed that heat and humidity make things worse....a sudden onset of cold air (like walking in the grocery store freezer section in flip flops) brings it on...
I now wear insulated socks even in the summer to keep my feet a more regular temperature.
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Old 08-05-2017, 03:10 PM   #5
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Re: NON Diabetic Peripheral Neuropathy

Do any of you get worse if you over do something like picking up a box, moving light furniture or walking too long. Are you able to walk up several steps. Like going to the 2nd floor of an apartment building?

 
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Old 08-05-2017, 03:38 PM   #6
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Re: NON Diabetic Peripheral Neuropathy

Could any of this be related to your hormones? Have you had them checked? From what Ive read and heard many have symptoms of numbness/tingling due to lack of hormones or those in menopause.

 
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Old 08-30-2017, 03:19 PM   #7
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Re: NON Diabetic Peripheral Neuropathy

Quote:
Originally Posted by pearl240 View Post
Hi...although I'm having a conflict with 2 of my doctors, the neurologist did a nerve conduction test and he diagnosed me with peripheral neuropathy and was put on Gabapentin. It began to help eith the all over pain..feet, legs, hands and arms. I have an autoimmune disease and he feels that its ehat causevmy nerve pain.
It might be that your autoimmune disease is the cause, but I would still want to be tested for treatable causes, namely low thyroid hormone levels, and vitamin b12 and folate deficiency. These often occur along with autoimmune diseases and if low, treatment can help. They are all checked by blood tests.

 
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Old 08-30-2017, 03:25 PM   #8
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Re: NON Diabetic Peripheral Neuropathy

Quote:
Originally Posted by ladybud View Post
It might be that your autoimmune disease is the cause, but I would still want to be tested for treatable causes, namely low thyroid hormone levels, and vitamin b12 and folate deficiency. These often occur along with autoimmunrt all oe diseases and if low, treatment can help. They are all checked by blood tests.
Thank you...i just want to figure out why my legs, feet, arms and hands and it's exhausting to tolerate the pain. Thank you )-:

 
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Old 08-30-2017, 03:33 PM   #9
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Re: NON Diabetic Peripheral Neuropathy

Quote:
Originally Posted by pearl240 View Post
Thank you...i just want to figure out why my legs, feet, arms and hands and it's exhausting to tolerate the pain. Thank you )-:
Have you been diagnosed with Type 1 or Type 2 diabetes?

 
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Old 08-30-2017, 03:51 PM   #10
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Re: NON Diabetic Peripheral Neuropathy

Quote:
Originally Posted by Janedoll View Post
Have you been diagnosed with Type 1 or Type 2 diabetes?
No...last time I saw the Endocrinologist he mentioned like bring on the border of it. I have hashimotos so I see him for that. I had a bilateral RF ablation Monday so it's suppose to help my back and upper leg pain, but today, like many days for months now, I have horrible pain in my legs down to the feet and same as my arms down to my hands. 1st Neurologist dis a nerve induction and said I have Polyneuropathy, I went to new neurologist hoping for better pain management...he tested my knee and foot reflexes and said to get off the have because he said I don't have neuropathy. I stopped the gave and I've been like this since...i left a message for him to read the nerve test from the other doctor...he called me and said that the test foes show neuropathy (it's craxy) he ordered a skin biopsy and results should be back next week.
Why have I been in bed unable to get out of bed, pain all over my legs and arms,but this horrible killer fatigue has me like I'm falling into a coma from fatigue. Thank you so much for reading and your help. May be I'll move up my appt and see the endocrinologist. Thank you solo much

 
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Old 08-30-2017, 03:57 PM   #11
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Re: NON Diabetic Peripheral Neuropathy

Quote:
Originally Posted by pearl240 View Post
No...last time I saw the Endocrinologist he mentioned like bring on the border of it. I have hashimotos so I see him for that. I had a bilateral RF ablation Monday so it's suppose to help my back and upper leg pain, but today, like many days for months now, I have horrible pain in my legs down to the feet and same as my arms down to my hands. 1st Neurologist dis a nerve induction and said I have Polyneuropathy, I went to new neurologist hoping for better pain management...he tested my knee and foot reflexes and said to get off the have because he said I don't have neuropathy. I stopped the gave and I've been like this since...i left a message for him to read the nerve test from the other doctor...he called me and said that the test foes show neuropathy (it's craxy) he ordered a skin biopsy and results should be back next week.
Why have I been in bed unable to get out of bed, pain all over my legs and arms,but this horrible killer fatigue has me like I'm falling into a coma from fatigue. Thank you so much for reading and your help. May be I'll move up my appt and see the endocrinologist. Thank you solo much
Your endo said you were on the border of diabetes? Pre-diabetes can cause the same symptoms as full blown diabetes, I know because my grandma had the neuropathic pain even as a pre-diabetic.
Have you done a 2 hour glucose tolerance test? How high did your blood glucose rise?
Also Hashimoto can cause a lot of issues too especially since it is an autoimmune condition. You may not be on right dose of thyroid meds either hence the fatigue..
Yes, ask for more tests and dont give up!

Last edited by Janedoll; 08-30-2017 at 03:58 PM.

 
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Old 08-30-2017, 04:01 PM   #12
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Re: NON Diabetic Peripheral Neuropathy

Quote:
Originally Posted by Janedoll View Post
Your endo said you were on the border of diabetes? Pre-diabetes can cause the same symptoms as full blown diabetes, I know because my grandma had the neuropathic pain even as a pre-diabetic.
Have you done a 2 hour glucose tolerance test? How high did your blood glucose rise?
Also Hashimoto can cause a lot of issues too especially since it is an autoimmune condition. You may be untreated as well.. not on right dose of thyroid meds hence the fatigue..
Yes, ask for more tests and dont give up!
Thank you..no..never give up. When the new neurologist said I didn't have neuropathy I called and demanded that he review the nerve test as soon as it was sent...he called me, was apologetic for not doing his job.

I need to see the endro...soon. thanks again....you have to be your own advocate. Thanks

 
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Old 09-09-2017, 12:46 AM   #13
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Re: NON Diabetic Peripheral Neuropathy

I have had idiopathic peripheral neuropathy since 1998. My feet were terrible for several years where standing, walking, bike riding all hurt but now it is my hands that bother me more. I used to take Gabapentin, but have been on Lyrica for about 10 years. I take a really high dose, 1200 mg, but even that isn't enough to make the pain go away and often I take 1500 mg. Non-diabetic neuropathy is hard to treat because if you can't determine the cause you are left just treating the symptoms and they don't respond to much.

 
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Old 09-09-2017, 06:17 AM   #14
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Re: NON Diabetic Peripheral Neuropathy

Quote:
Originally Posted by Janedoll View Post
Your endo said you were on the border of diabetes? Pre-diabetes can cause the same symptoms as full blown diabetes, I know because my grandma had the neuropathic pain even as a pre-diabetic.
Have you done a 2 hour glucose tolerance test? How high did your blood glucose rise?
Also Hashimoto can cause a lot of issues too especially since it is an autoimmune condition. You may not be on right dose of thyroid meds either hence the fatigue..
Yes, ask for more tests and dont give up!
With your fatigue being so severe and having Hashimoto disease, I would want thyroid hormone levels done to make sure you are on an adequate dose of thyroid replacement. I would also ask for testing for lupus, as many people have more than one autoimmune disease. Was the skin biopsy taken from a rash area? That may be helpful as well. If the gabapentin helped you, I would try to get back on it. Cymbalta is another medicine used for PN, not as sedating compared to the other two.

 
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