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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)Comment receiving replies
Hi, I'm new to the group. I suffer from idopathic peripheral neuropathy so I'm very interested in what works for others that I could try. However, I'm frustrated in my quest because so many of the participants use shortcuts to identify different therapies or medicines they use. I have no idea what DRG, SCS and all the other abreviations mean. I realize that many of you have been on this site for some time and I'm sorry for the pain you're experiencing. If you could, the first time you mention one of these items please spell out what the letters stand for then in () add the abreviation after the words. Then to your heart's content go ahead and use the abreviations.
Thanks
James
Replies to "Hi, I'm new to the group. I suffer from idopathic peripheral neuropathy so I'm very interested..."
@jamesinsonoma Hi James and welcome to Connect. I'm sorry to hear of your diagnosis. I have small fiber polyneuropathy from a B12 deficiency. I have full body pain that is debilitating. I take Norco (hydrocodone), medical marijuana and Lyrica, along with a plethora of supplements such as R- Alpha Lipoic Acid, Acetyl L Carnitine, magnesium, B12, Omega 3, Hemp oil, etc... Let me know if you have any further questions. Be well.
Rachel
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@jamesinsonoma All of the abbreviations can be hard to keep up with.
(Adding to what I wrote in the following post yesterday: How long have you had the diagnosis of PN? Have you tried very many treatments? If you're like me, multiple doctors have had me try many, many meds, along with an SCS implant and seeing a pain therapist.)
I also have idiopathic small fiber polyneuropathy (sfpn) Sfn is small fiber neuropathy. Almost 3 years ago I had a Burst DR spinal cord stimulator implant (scs), and for the first year I had 75% pain relief. After the first year, the pain began to return, so I would make an appointment with the company rep to adjust the settings on the controller. This became a 3 month process. Around the end of last year the adjustments stopped helping. At the end of February I turned it off to see how much it was doing, and I couldn't feel any change. I turned it back on a few days ago and my pain hasn't slowed down at all. My feet and ankles have bad burning pain, so the neurosurgeon I met with last fall talked to the guy who does the controller adjustments to suggest a different approach. It hasn't helped.
Moving on, I had an appointment with the doctor to discuss a new treatment, a drg implant (dorsal root ganglion), which targets more specifically the nerves that are causing problems.
If you have time, it could be helpful if you go back in the discussion and read what others have written about sfn, scs drg, etc.
Jim