1. < Neuropathy
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Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

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lar | @lar | Jul 30, 2022
In reply to @johnbishop "Welcome @lar, It sounds like you hit the jackpot with the second neurologist. Isn't it amazing..." + (show)
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Welcome @lar, It sounds like you hit the jackpot with the second neurologist. Isn't it amazing when a doctor listens to you and is helpful then actually comes up with a treatment plan that helps.

Did your second neurologist order any tests and give you a diagnosis before prescribing the nortriptyline?

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No. I had been taking Simply Sleep for years but he wanted me to use nortriptyline instead. It works very well.

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jchet | @jchet | Jul 30, 2022
In reply to @jeanallen "Is there anyone along with pain and numbness in feet have a lot of swelling as..." + (show)
Profile picture for jeanallen @jeanallen

Is there anyone along with pain and numbness in feet have a lot of swelling
as well?

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Yes, I have swelling and warmth in my feet mainly. Have you tried anything that helps?

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jeanallen | @jeanallen | Jul 30, 2022

The Gabapentin helps some. I am now taking 2 at night. Night before last the pain was terrible in my feet and legs.I have swelling in my legs and ankle. Do you ever have the swelling? Thank you so much.God be with you.

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SusanEllen66 Susan McMichael | @SusanEllen66 | Jul 30, 2022
In reply to @pamelaz "Is yours bad? Mine is horrible." + (show)
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Is yours bad? Mine is horrible.

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It depends. I think I have learned to somewhat ignore it…is that possible? Sometimes. Right this moment, both feet are burning and ice cold at the same time. Usually I have “bugs” running up and down my arms and legs. I never know if it’s my nerves or real bugs so I find myself smacking my arms, neck etc.
Then there are the sharp, stinging zaps I get everywhere.
It’s really bothersome to say the least.
For me it’s the result of a really life threatening disease. So my focus is on the Vasculitis I have…

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tpea | @tpea | Jul 31, 2022
In reply to @artscaping "@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton..." + (show)
Profile picture for Chris, Alumni Mentor @artscaping

@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

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Please post. I would like to hear your successes/suggestions. Thx for sharing and volunteering.
I am new here.

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Nancy Banks | @banksnc49 | Aug 1, 2022

I have non- diabetic neuropathy. I have had it about 8 yrs. I was told it may be due to kidney disease. I had a kidney transplant almost 8 yrs ago and I still have it. I wish they could come up with a treatment for it.

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Jake | @jakedduck1 | Aug 1, 2022

@banksnc49
Some get relief with meds, vitamins and Marijuana etc.
I’ve had Neutopathy for 35 or so years. I no longer have the pain only numbness which is irritating but tolerable.
Have you tried any treatments?
Jake

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2 replies
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Nancy Banks | @banksnc49 | Aug 1, 2022
In reply to @jakedduck1 "@banksnc49 Some get relief with meds, vitamins and Marijuana etc. I’ve had Neutopathy for 35 or..." + (show)
Profile picture for Jake @jakedduck1

@banksnc49
Some get relief with meds, vitamins and Marijuana etc.
I’ve had Neutopathy for 35 or so years. I no longer have the pain only numbness which is irritating but tolerable.
Have you tried any treatments?
Jake

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I’ve tried many things- drugs, PT, laser treatments, Tens, creams. Some days are better than others. I know having too much sugar makes it worse even tho I’m not diabetic.

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Arthur W Roberts III | @awroberts111 | Aug 1, 2022
In reply to @rickhood "I posted here somewhere else before, just updating.... I have neuropathy in the feet: strictly numbness,..." + (show)
Profile picture for rickhood @rickhood

I posted here somewhere else before, just updating....
I have neuropathy in the feet: strictly numbness, no tingling or other.
It started all of a sudden in the left foot, 3 years ago.
Detail: it did not start in the toes, it started in the whole front of the foot (mid point forward) all at once.
A year later it moved to the right foot.
It is gradually getting worse in both feet.
B12 is low but I take shots for it.
Fasting glucose is in low 100s, so a bit high, but A1C is always fine.
No alcohol, smoking or drugs.
I do have an issue in my lower back, but people looking at MRI do not thing that is an issue.
I had a doctor do a spinal epidural anyways -- he used anesthetic not cortisone (he was reluctant on the cortisone) which had no effect at all. Maybe try cortisone?
Been to 2 neurologists, both conclude unknown cause.
PT I went to thinks it is the back, because one visit he worked on my back and it made it better -- but in other visits, the same work had no effect, so inconclusive.
My regular doctor says circulation is fine.
If it matters, I have that thing where if I bend my elbow for a while, my hand goes numb.
But permanent numbness is only in the feet.
Only drug I take is lisinopril for high blood pressure (which is not very high)
I was put in a statin a year before this started -- which makes me wonder, as I know that can be a cause? -- but I stopped back then because cardiologist said I don't need it.
I walk 2 hours a day, love walking.
I can live with it, but worry it will get worse.
Not sure what else to do.

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I had similar PN, but after many MRIs and a year and a half, a PET test found a spot at T11, inside spinal chord.

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deluga | @deluga | Aug 1, 2022

I've had peripheral neuropathy for 25+ years in both legs that was mis-diagnosed as gout, Eventually I was sent to a neurologist 3 years ago who checked my reflexes and hands at last and sent my blood in for many tests. He immediately put me on alpha lipoic acid (ALA) which is a prescription medicine in Europe but OTC in the USA. In 3 weeks I started to get relief. I then switched brands from Jarrow to Pure Encapsulations which is much more expensive but gave me much more relief. It took 1 year before the big toe was pain free and the burning sensations disappeared. Up until last week, other then crunchy toes and not as much feeling in my fingers, I've been free of pain.

Last week I started a cancer drug, Letrozole, and had to stop in 3 days because it completely aggravated and extended my neuropathy. I'm seeing a new neurologist since mine retired and will report back.

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