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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 2 days ago | Replies (6026)

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@airpod

Hello, I'm new to this group.. I'm struggling with neuropathy from an unknown source as of now. My family Dr told me it was from prediabetes but my A1C is usually around 5.7 but last check up was 5.3..
I first noticed a problem about 2 years ago when I was dressing up to go out and I could not walk in my heels. My toes felt broken. Then I started noticing the tingling and burning in my feet. I visited a podiatrist who took xray and examed my feet and he said perephial neuropathy.. He sent me to a neurologist who I didn't feel very confident in who did a study of tests and said the same thing.. Well it's been 2 years 3 doctors and I still don't agree with the diagnosis.. I've questioned my medical Dr several times about it and he says we may never know the cause. He put me on Gabapentin but I refused thev300 mg and I'm taking 100 mg 3times most days .. I'm worried about not knowing the cause and being able to treat it so it doesn't get worse. It has since started tingling in my left hand and sometimes my leg muscles feel weak.. My Dr said we are treating it.. I said how? He said with Gabapentin.. Is that REALLY treating it or just putting a bandaid on it? Idk.. I've had several major abdominal surgeries. My lower belly is still numb. I asked if this could be why I'm having problems. He said no..
It is causing me great anxiety not knowing.. Anyone have any suggestions for me?..

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Replies to "Hello, I'm new to this group.. I'm struggling with neuropathy from an unknown source as of..."

@airpod
The usual starting dose of gabapentin is 300 mg three times a day to its maximum dose of 3,600 mg. It is given in divided doses because its half-life is so short 5-7 hours. I don’t imagine you’re getting any relief of your symptoms on 300 mg a day, are you? Could it be your extremely sensitive to medication side effects? I took the max dose and it never helped my seizures or neuropathy. Mine was caused by seizure medication. My brother currently is taking the maximum dose and it helps him. His was caused by extensive surgery on both legs after being crushed and his femoral arteries severed.
Were the tests your Neurologist did a nerve conduction study and electromyogram (EMG)? Did your doctors do some bloodwork to check for vitamin deficiencies, Diabetes, Thyroid, etc?
Why do you doubt your doctor's diagnosis?
Like all Anti-convulsant Gabapentin may cause drowsiness but usually gets better if not goes away completely.
My neuropathy got better but it took a long time. My pain is gone but I have a great deal of numbness from my feet to my waist.
Take care,
Jake

@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

Hello @airpod, I would like to add my welcome to Connect along with @jakedduck1, @jesfactsmon and others. I was sort of told the same thing by my primary care doc about the prediabetes and my numbers were similar to yours. I don't have the pain with my neuropathy, just the numbness and gabapentin doesn't help with that symptom. The gabapentin is only used to treat the symptom and really does nothing to fix the problem which is damaged, dead, or compressed nerves - just my opinion and I have no medical background but have done a lot of research on the subject. There are a few more discussions you may find helpful.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
- Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

I'm happy you found Connect because probably the best thing you can do to help is to learn as much as you can about your condition and become a better advocate for your health. There is a wealth of information in patient experience here on Connect. You mentioned you have numbness in your lower belly area and that you were wondering if it could be related to previous abdominal surgeries you've had. Here is an article that may provide more information for you on the subject - Numbness and Tingling After Surgery: https://www.verywellhealth.com/numbness-and-tingling-after-surgery-3156878

Are you able to share what types of abdominal surgery you had?