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Looking to connect with people who have non-diabetic neuropathy
Neuropathy | Last Active: 6 hours ago | Replies (1165)Comment receiving replies
I have had either idiopathic or genetic peripheral neuropathy for about 30 years. I am now 80. I have (had) 5 cousins, 3 of which also have it without having diabetes. Most of the bottom of my feet are now completely numb which makes it hard to keep my balance. The nerves are constantly producing little shocks in my legs that are not painful; at least 100/minute. Depending upon which muscle the nerve activates, the shocks can make that muscle twitch. Most of the shocks are just felt and don't cause movement. As soon as I move my leg, the shocks stop but return within 10 seconds. I can ignore the pain and if I keep my mind busy. The burning and tingling is now all over my body except for the back of my head. My biggest problem is with balance.
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My peripheral neuropathy is cause unknown.
It’s either genetic or idiopathic like yours.
I’m dealing with this since I was 60 and now im 63.
Been to many neurologists over the years with no relief.
Been on all the drugs and IV infusions like IVIG and nothing has helped me.
Those shocks that I would get make me yell out in pain, and my poor dog would run into another room.
I would get them in different areas of my legs and feet.
Sometimes it would feel like someone put my toe in a vice.
No one knows what’s like until they experience it themself.
What’s been helping me lately is Lyrica 50 mg 3 times a day.
Seems to definitely cut down those stabbing pains I was getting.
My feet and legs are still numb and I still have pins and needles,but they’re more manageable.
I’m starting Rituxan infusions at my neurologist in Sept.
He said if I’ve tried ABand C,then we have to go Rituxan.
Wouldn’t cover the med in Florida, where I was living.