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#1 | ||
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Member
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Doctor just reviewed my EMG tests and told me I have this disease.
Is it the same as Periphereal Neuropathy. Will the damage be reverse or will it get worst I will eventually lose the use of my legs and arms? I am type 2 diabetic with kidney disease. I am currently on a short term disability from my job. My doctor could not give me a definite date to return back to work. Some have mention SSA benefits does anyone here have this disease. I currently take neurontin (which does not work) and have tried cymalta, lyrica and amitriplyine as well. Pain is horrible and most nights I do not sleep. Getting depressed and frustrated that I can not get a break from this pain. All of my joints hurts, especially my hips and shoulders, it is very difficult to walk. Anyone out there with this condition??? |
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#2 | ||
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Junior Member
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Hi Colby,
I have been given a diagnosis of sensory motor polyneuropathy. They have not found the cause of my polyneuropathy yet. I`m having problems walking too but for the most part it is mild so far. The worst part for me is the muscle spasms and the burning sensations. I`m sure someone else will be along who knows lots about this as it is all new to me. Try reading the stickies at the top of the page. Lots of great info there. (hugs) Kelly
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Charcot-Marie-Tooth Disease Type 1A Fibromyalgia |
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#3 | ||
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Senior Member
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I know some diabetics that once they got their sugars levels under tight control their neuropathy has improved greatly over time. you may like to read this - http://www.diabetic-talk.org/dpn.htm Brian ![]() |
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"Thanks for this!" says: | lynxgal (10-09-2008) |
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#4 | ||
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Member
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How long have you been taking the neurontin. My experience was that they started me on low dosages and gradually increased the dosages until I got to a point where I have releif. It took about a month for me to tritrate up to the correct dosage. |
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#5 | ||
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Member
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I have been on Neurontin since 8/08. I am now up to 900 mg at bedtime.
My latest A1C is down to 8.1 from 12.4 in 7/08. My doctor on Friday prescribed tramadol for the pain as well after having a very very bad night pain wise on Thursday. Everyone says excercise helps however when I do walk when I come home my ankles are swollen at least twice their normal size and then the next day I stay in bed with my feet elevated. I also have diabetic nephrology where I spill alot of protein in my urine. I am considering applying for SSA benefits since my job requires me to stand on my feet all day dealing with the public. Being at home off my feet the pain is so bad at times I am constantly snapping at my children and husband. Then nights cant sleep... |
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#6 | ||
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Member
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Colby - is that 900 mgs a day? If so I believe that is a small dose. Others with more knowledge can correct me if incorrect. I take 1200 mgs 4 times a day, and 25 mgs of amitryp. at bedtime with tramadol for breakthrough pain. Hang in there and keep talking to the docs. You may need to increase the dose of neurontin. I have a friend with diabetes and PN. He controls his diet (as Brian stated) and uses the supplements discussed in the stickies. He is having very good luck with decreasing his pain from neuropathy. Also, I have had good luck with the lidoderm patches. There is guidance under the posts by mrsD. on how to use them as proper placement is key. |
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#7 | |||
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Wisest Elder Ever
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Here is a study continuing to show benefits of benfotiamine in diabetic neuropathy:
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Start at 300mg a day, and if you find with time improvement you can reduce to 150mg/day. ( I use Doctor's Best brand). Another supplement that will help is r-lipoic acid. This lowers blood sugar as well. If you take drugs or insulin you may need a dose adjustment "down" when you use this. 100mg/day is typical.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#8 | ||
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Senior Member
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Colby, elavated blood sugars caused my PN as well, mine started at only prediabetic levels but i know i found it impossible to walk the pavements for exercise, just to painfull to do, so i opted to go to my local indoor pool and just walked up and down the lanes early in the morning, this give me no pain what so ever.
When your ready to claim for Disabilty, may i suggest to look in the stickies there is a post by DanP .." Help with applying for SS disabilty ". Brian ![]() |
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