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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 2 days ago | Replies (6026)Comment receiving replies
@airpod
Hi, and welcome to Connect. I'm sorry to hear that you are afflicted with peripheral neuropathy (PN). In addition to the 2 tests Leonard mentioned there is a third test that many people have done to test for PN called a skin punch biopsy. Did they do any of these 3 tests on you? It sounds like you are not in disagreement with the diagnosis of PN, just about what they say caused it. Since you mentioned surgery I know that a lot of people believe their cases of PN were caused by surgery. One thing to know is there are many different things that can cause it, and I'm not sure anyone knows what they all are. Many people never figure out what caused theirs. For some, like my wife, its a no-brainer, she got her first symptoms the day after her 2nd chemo infusion. When someone says they are treating you with gabapentin, I believe they mean treating the pain symptoms, not the PN itself. I have not heard of anyone taking such a low dose of it. You probably already know that many people believe there is no cure for neuropathy. I believe there is no obvious cure right now but that one will likely appear in the next few years, just a feeling I have.
Sorry that your PN has started to move from your feet into your hand and upper leg. Everyone's case is different it seems. My wife has had it for 6 years and it has stayed in her feet and ankles 99% of the time, with burning, itching and some paresthesia (pins and needles) also. It is very debilitating and causes her to be very fatigued. My wife, like many others, tries everything she hears about to alleviate her pain short of taking drugs (the one exception was gabapentin for 2-3 months a couple years back -no relief from that for her, just bad side effects). Currently she is trying cold laser light therapy using a unit we purchased (been doing it for 2 weeks so far, still not sure if it's going to help her).
So, if you spend some time here in this forum, particularly reading the neuropathy group posts, you will learn a lot more of actual PN sufferers experiences. We have learned a lot since we started coming here. Hope you do as well. Best, Hank
Replies to "@airpod Hi, and welcome to Connect. I'm sorry to hear that you are afflicted with peripheral..."
Hi Hank, FYI, I take 300 mg. gabapentin 1x at night and I am good for 24 hrs. I could probably take more during the day but prefer not to and put up with the discomfort. I have read that less is better with gabapentin, better to start off slow and increase the dosage if/when necessary. My Dr. originally prescribed a higher dose to be taken 3x day but I couldn’t function so I cut back. Everyone’s body reacts differently to drugs, so I think often better to start off slowly. P.S. I do not take any other prescription meds so that may be a factor. Helen
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Thank you for responding. In still learning to maneuver about on this site😁. I have not had the biopsy test and I was not very confident with the neurologist I saw. When I first mentioned the pins and needles and burning the Dr just said perephial neuropathy and Gabapentin then he was finished. I'm trying to Google and seek ways I can find out exactly what I have and what kind of Dr I need to see. I called another neurologist but I have to have my Dr refer me. It's just so frustrating but I need to know the cause.. I think I can handle it better if I know that I've been properly tested and I know what I'm dealing with. Right Now it keeps me anxious. Will I lose the ability to walk? Will the numbness get worse? Will I lose control? These are questions that stays in the back of my mind.