Living with Neuropathy - Welcome to the group

I have recently been diagnosed with idiopathic peripheral neuropathy that had rather aggressively developed. My neurologist has tried numerous prescriptions but nothing has worked, even gabapentin! I have a consultation with a specialist neurologist on February 19th, the possibility is that he will try a steroid injection but probably will also discuss the SCS implant procedure. Any insights would be greatly appreciated.

@blowerk1216, I did a quick search of Connect using "steroid injections vs spinal cord stimulators" and found a discussion that might be helpful:
-- Use New Article About Treating Peripheral Neuropathy
https://connect.mayoclinic.org/discussion/use-new-article-about-treating-peripheral-neuropathy/
@jenniferhunter posted about a steroid injection in the spine helping with the pain might mean that surgery may be an option to provide pain relief - https://connect.mayoclinic.org/comment/1119146/. Is the steroid injection in the spine?

@jimminnesota I have PN also and am not taking anything except alpha Lipoic acid, 600 mg daily. Starting g to have some ankle swelling and not sure if it’s related to the neuropathy. Anyone else having swelling? I exercise, work part-time and stay as active as I can. I’m in my mid70’s.

Great to be part of this group. I am 72 and have idiopathic neuropathy. I don’t have pain, just tingling. I’m taking 600 mg of alpha Lipoic acid daily but it doesn’t seem to help. I was also taking 1000 mg of Turnetic daily but that also had no positive affect and was causing some stomach issues so I stopped taking it. I am very active, exercise, work part-time and now starting to experience some lower leg and ankle swelling, in the last few days. Anyone have any similar problems with swelling? Thank you.

I have recently been diagnosed with idiopathic peripheral neuropathy that had rather aggressively developed. My neurologist has tried numerous prescriptions but nothing has worked, even gabapentin! I have a consultation with a specialist neurologist on February 19th, the possibility is that he will try a steroid injection but probably will also discuss the SCS implant procedure. Any insights would be greatly appreciated.

@blowerk1216 Ugh, my heart goes out to you, friend. I hope you can find relief soon! And, find some practical things to keep the pain at bay besides. I've had an SCS implant for 3.5 yrs now, and it's been a godsend. It's different for everyone, but I'm crossing all my fingers and toes that the trial (should you decide to pursue) will help you and elicit the relief you desire. The recovery [from the permanent SCS] is long and slow (merely due to restrictions), but totally worth it. Anything else you want to know about it, feel free to ask. 🙂 Best of luck at your appt!!

@rivermaya34
I saw your response to "blowerk1216" mentioning that you have a SCS implant. That is about the only option remaining for me to deal with arthritis in my lower spine. SPECT scan indicates it is worst at L5-S1 and in the R SI. Nuerosurgeon has suggested the SCS and I hesitated because of nebulous pain in the area of the R hip. I've since had a R hip replacement and the pain is still there, and that which was centered on the hip area is gone. You mention that the recovery from the SCS is long and slow. Can you please elaborate? I'm interested in what I'll be facing if I decide to go the SCS route. Thanks much for your post!

@joanland Yes, of course! I'm so sorry you're dealing with so much pain 😓 So, the trial is easy, but a little awkward because most of the hardware is external, minus the leads. They're put in one day and taken out 4 days later. During that week, make sure to be in touch with device reps, if need be. Depending how you do will determine your eligibility for permanent implant. If you do it, you'll have to do a pre-op appt (for insurance) that states it's necessary, etc. Then, you have to do a mental assessment (it's required and very easy - they will set you up for success, don't worry). Then, the surgery takes a few hours. They will put it on one side of your lower back. I woke up with my torso wrapped snugly and then I wore an abdominal binder for the first 2 weeks, which is actually surprisingly comfortable. Movement is your biggest concern. Depending on where they put your leads (They'll be sutured in), you want to make sure you follow the restrictions very carefully. 3 months of restrictions, then light duty after that. Biggest concern initially is leads moving. You will know if they do bc you will feel it. After a little while, that will not be a concern. Good thing is your reps can meet with you anytime to make adjustments and set programs on your remote, etc. They are always available to talk 24/7. You'll get an ID card and need to charge yourself (each person is different) about once a month. There should be minimal post op pain (just getting used to it there). Mine is a little awkward just bc I'm pretty thin, so mine visibly sticks out. It can be annoying while driving or sitting, but I mostly tune it out. You can still get MRIs (at least with Boston Scientific) and fly, etc. After 3 months, you should be normalizing and able to move more freely and getting pretty used to having it. It will be an adjustment, for sure. But, I believe it to be worth it. They also said you'll have to get it replaced about every 6-8 years. If it doesn't work for you, it can always be removed. Hope this helps...I'm sure I'm forgetting things.

@blowerk1216 Ugh, my heart goes out to you, friend. I hope you can find relief soon! And, find some practical things to keep the pain at bay besides. I've had an SCS implant for 3.5 yrs now, and it's been a godsend. It's different for everyone, but I'm crossing all my fingers and toes that the trial (should you decide to pursue) will help you and elicit the relief you desire. The recovery [from the permanent SCS] is long and slow (merely due to restrictions), but totally worth it. Anything else you want to know about it, feel free to ask. 🙂 Best of luck at your appt!!

@blowerk1216 Ugh, my heart goes out to you, friend. I hope you can find relief soon! And, find some practical things to keep the pain at bay besides. I've had an SCS implant for 3.5 yrs now, and it's been a godsend. It's different for everyone, but I'm crossing all my fingers and toes that the trial (should you decide to pursue) will help you and elicit the relief you desire. The recovery [from the permanent SCS] is long and slow (merely due to restrictions), but totally worth it. Anything else you want to know about it, feel free to ask. 🙂 Best of luck at your appt!!