NeuroTalk Support Groups - Polyneuropathy

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Polyneuropathy (https://www.neurotalk.org/peripheral-neuropathy/55924-polyneuropathy.html)

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???

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

Quote:

Originally Posted by COLBEYMOORE (Post 385166)

Peripheral meaning the nerves outside the brain and spinal cord.....neuro meaning nerves... pathy meaning damaged, it's just a general term used to explain what nerves are involved.....Poly meaning many, multiple usually affecting both sides at the same time.
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 :)

Quote:

Originally Posted by COLBEYMOORE (Post 385166)

Colby -

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.

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...

Quote:

Originally Posted by COLBEYMOORE (Post 386666)

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.

Here is a study continuing to show benefits of benfotiamine in diabetic neuropathy:

Quote:

Int J Clin Pharmacol Ther. 2005 Feb;43(2):71-7.Links

Erratum in:
Int J Clin Pharmacol Ther. 2005 Jun;43(6):304.

Benfotiamine in the treatment of diabetic polyneuropathy--a three-week randomized, controlled pilot study (BEDIP study).
Haupt E, Ledermann H, Köpcke W.

Saale-Klinik, Bad Kissingen, Lindenfels, Germany. BfA.Saaleklinik@t-online.de

OBJECTIVE: The aim of the study was to evaluate the efficacy of benfotiamine administered over three weeks (allithiamine; a lipid-soluble vitamin B1 prodrug with high bioavailability) to patients with diabetic polyneuropathy in a randomized, placebo-controlled, double-blind, two-center pilot study. MATERIAL AND METHODS: Forty inpatients (23 male, 18 female, age range 18 - 70 years) with a history of type 1 or 2 diabetes and polyneuropathy of not longer than two years, were included in the study. Twenty Patients received two 50 mg benfotiamine tablets four times daily and 20 patients received placebo over the three-week study period. Two clinical units were involved with 10 patients receiving placebo and 10 patients benfotiamine in each. The neuropathy score according to Katzenwadel et al. [1987] was used to evaluate symptoms of polyneuropathy, vibration perception threshold and both the physician's and the patient's own assessment were documented. RESULTS: A statistically significant (p = 0.0287) improvement in the neuropathy score was observed in the group given active drug when compared to the placebo-treated controls. There was no statistically significant change observed in the tuning fork test. The most pronounced effect on complaints was a decrease in pain (p = 0.0414). More patients in the benfotiamine-treated group than in the placebo group considered their clinical condition to have improved (p = 0.052). No side effects attributable to benfotiamine were observed. The differences between the groups cannot be attributed to a change in metabolic parameters since there were no significant alterations in the HbA1 levels and blood sugar profiles. The body mass index of the two groups did not differ. CONCLUSION: This pilot investigation (BEDIP Study) has confirmed the results of two earlier randomized controlled trials and has provided further evidence for the beneficial effects of benfotiamine in patients with diabetic neuropathy.
PMID: 15726875 [PubMed - indexed for MEDLINE]

This is a newer version of thiamine Vitamin B1...it is now affordable and available at iherb.com
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.

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 :)