Living with Neuropathy - Welcome to the group

Hello @fuzzy1southernga, Thank you for the private message. You mentioned being diagnosed with progressive idiopathic sensory motor polyneuropathy in early June. You said you were overwhelmed with the amount of learning needed and you enjoyed that Connect was laid back and informative which made it easier. I thought I would respond to your private message so other members can share their experiences with you also and at the same time I wanted to suggest a few more discussions that you might find helpful.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
- Polyneuropathy: https://connect.mayoclinic.org/discussion/polyneuropathy/
- Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
- If the shoe fits, wear it!: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-wear-it/

You mentioned being fit for orthotics made the seriousness of the disease real to you. Have you found anything that gives you any relief?

In addition to neuropathy and severe allodynia on my right side including my foot, shoes and socks are extremely important. I also have drop foot and need to wear a leg brace sometimes if walking in rough terrain. I live in Wyoming of that helps clarify that statement at all.
I’ve switched to Brooks tennis shoes. I only buy one pair of needed at a time, replacing the larger pair for my brace only maybe every couple of years or so if that.

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?..

@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

Thank you so much for responding. Yes I'm very sensitive to meds. My Dr wanted to start me at 300mg 3 times a day but I refused. So he agreed to start me slow. The 100mg makes me sleepy😔
But I'm about at the place where I'm ready to increase it. I have started having numbness in both large toes and my legs starts feeling weak usually starting after lunch.
I did have a nerve conduction test about 2 years ago and the Dr said no nerve damage.. the Dr was an ELDERLY woman who was nice but acted very confused. I'd really have considered asking for a 2nd opinion with another neurologist but I don't know what to do

Hi- i am so sorry that you are suffering. I was on 300 mg 3 x day of gabapentin as I was diagnosed with reflex sympathetic dystrophy (crps) back in 2007. The pain has gotten so bad but dr thought the gabapengin was not working. they told me to go down to 1 x 300 mg- I saw no difference- then I stopped- no difference except not sleeping. I had an emg/eeg test done on both legs after not being able to walk for 4 days. I have poly neuropathy in both legs- right leg has very little response at all. Now it appears I may have adrenal insuffiency and just saw my 5th dr to hopefully get some help. Dr. Said you need to be very aware as to if the medication is working or not. God bless I hope they are helping you. Hugs and feel better.

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.

How did they find adrenal insufficiency, blood test? See I don't know the difference with poly or perephial nueropathy

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?