Living with Neuropathy - Welcome to the group

Hi @summertime4 Are the B12 injectables not offered at the pharmacy? What is stopping you from self injecting? Maybe there is a chance you can do it on your own. The injection is given subcutaneously meaning injected in the fat tissue. There are visible sites for you. If possible self inject otherwise call the doctor who prescribed it and let him or her decide on alternates you may have.

@avmcbellar Thank you and @rwinney Good advise. I will check with the pharmacist and doctor. I don't know why I did not ask for a quick lesson so I can do this myself. Let me ask anyone who is low on B12 and injecting. My primary care doctor did not suggest B12 injections and my blood work showed normal levels. The neurologist prescribed the B12 without doing another blood test. He said that although the number is normal I may not be metabolizing or getting into my system because I had surgery on my stomach 9 years ago. I had a nisson funtalmentation? because my esophagus was being harmed by stomach acid. I do know this to be true, but didn't ask if that were going on wouldn't my B12 be under normal amount.

@summertime4, glad to help with any insight. I don’t know what blood test was done. Since you had digestive surgery, if the intrinsic factor is no longer there to absorb the B12 perhaps you have pernicious anemia. Usually those people are prescribed B12 injections and should get an energy boost. If the intrinsic factor is not present to absorb the B12 then pill form will not work. That is why it is given in an injectable form to bypass the digestive system.

@avmcbellar Thank you. No one has ever told me about this. Obviously this is what the neurologist is thinking and makes sense to me. This may be the culprit in my neoropathy. I will be looking into this. Wow.

@summertime4 You are welcomed. Good luck! Ask the neurologist questions as to why the injections. Is it to boost your energy? Do you have pernicious anemia? A specific blood test needs to be done for determination and not the B12 deficiency.

@summertime4 Ahh...more to it than meets the eye.

I have neuropathy in my feet, ankles, and lower back. The burning is so intense at times it brings me to tears. I have medical marijuana, it is an oil that you put under your tongue. I have taken a lot of it and it does nothing for me. I am thinking I need a cream to apply to my back. Has anyone experienced this? I have been to many doctors and clinics with no progress.

Same as you! Am 68 with spinal stenosis! Had surgery, shots, creams and recently tried stimulator on spine! It works for me!

Hello @robtlhughes, Welcome to Mayo Clinic Connect. I also have idiopathic small fiber peripheral neuropathy and understand your feeling about what is next. You have taken a great first step by starting your journey of learning everything you can about your condition so that you can ask better questions and hopefully get better answers from your healthcare team or doctors. There are a few discussion here on Connect that you may want to join in and follow to learn what other members with similar symptoms have shared.

- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
- Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/
- Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

There are a couple of websites with resources for learning more about neuropathy that may be helpful for you:

- Neuropathy Commons: https://neuropathycommons.org/
- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

I've been where you are with what's the point and all I can do is tell you it's a learning process and share my experience. Being that I let my neuropathy progress for 20+ years before seeking a diagnosis I would in retrospect would have tried to get a diagnosis sooner. Because I only had numbness with my neuropathy and I asked if I have the nerve test and you determine I have nerve damage what treatment will help with the numbness. They told me they didn't have a treatment that would help so I just let it go. The result may still have been the same for me but I would have started my learning process earlier and who knows what would have happened...I don't 🙂 One question you might ask your current doctor if you don't have pain with your neuropathy -- why did they prescribe Gabapentin? When I finally started asking my care team questions and looking into the numbness in my feet and legs my primary care put me on Gabapentin. After 2 weeks and no change I met with the doctor and asked her why the was no change. She brought the other care team members and leader into the discussion and they had me describe my symptoms which were numbness only, no pain. Then they said Gabapentin only helps with the pain and does nothing for numbness so I stopped taking it. Gabapentin comes with it's own side effects which you may or may not have. Mayo Clinic has some information here: https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011

Do you have pain associated with your neuropathy?

I was diagnosed with idiopathic peripheral neuropathy about 18 months ago, primarily of the sensory kind. I've had an EMG/NCS and a plethora of blood tests. I take 600 mg of gabapentin at bedtime to help with sleep. There is no pain. But it began with uncomfortable, hard-to-describe numbness in my feet that over the past several months has crept up to my knees. After five or six hours in bed at night, my legs start to feel like they're burning, keeping me awake. Once I'm up and about it quickly and mostly disappears. My readings and Dr. Google suggest nothing can be done. The doctors around here don't disagree with that. I have an appointment at a teaching hospital in July, but because it's 500 miles away and because of the coronea virus, I'm thinking what's the point. Any experiences or advice to share will be welcomed.