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Wed, Sep 18 2:57pm · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

Hello all!

Has anyone ever had intravenous lidocaine? A new pain doctor is recommending it and the articles on the web make it sound like a 50/50 proposition at best. Would love to hear from anyone who had this treatment and how it worked.

Many thanks!

Mark

Tue, Sep 3 8:12pm · Acupuncture helpful for peripheral neuropathy (PN)? in Neuropathy

Hello, Acupuncture is like any other treatment it helps some people and some conditions. What I have heard is that you need to try at least 10 sessions in rapid succession and see if it works. I had three completely different acupuncturists, the first took 2 1/2 hours per session with lots of meditation between changes in needles and positions. Great music, very relaxing ultimately felt that it took too much time and a massage felt better. I only did I think 4 treatments with this guy, who by the way was the nicest guy. The next ones were a husband and wife team who took 20 minutes per session and felt that patients were shared so I talked to the husband about my bad back and neuropathic pain and after a few sessions the wife pinch-hit and gave me my treatments and then back to the husband. I did 12 sessions with them and didn't feel better so stopped. Then a friend in DC who had a chinese doctor help with Hep-C from a blood transfusion in Africa and swore by both Chinese herbs and acupuncture got me to see a Chinese doctor who his doctor in DC identified as the best acupuncturist in Boston. I saw him for 14 times tried chinese herbs and it just didn't work. I have Chinese colleagues who see Chinese doctors and take Chinese herbs for any ailment and they and my friend all have been dramatically helped by acupuncturists.

All that being said, if you have tried it 14 times and it isn't working for you, I would think you've given it a good try and you might want to try something else. The only caveat to that is my Chinese colleagues have told me that Chinese medicine works slowly and most westerners can’t slow down enough to let the medicine in. They say that they don't like the quick fix of western medicine and like the slow, but they feel longer lasting cures from Eastern medicine. It might be worth a little reflection on whether you have given it a chance to heal you, or whether you might need a different attitude to really give it a chance to work.

Tue, Jul 30 8:45am · Living with Neuropathy - Welcome to the group in Neuropathy

Hi Justin,

My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.

I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.

I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."

These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?

Many thanks!

Mark

Mon, Jul 29 4:20pm · Living with Neuropathy - Welcome to the group in Neuropathy

Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

Sat, May 18 9:46am · IVIG Infusions in Neuropathy

Hi,

Can you please get me your external email and I will introduce the two of you.

Have a great weekend!

Wed, May 15 7:04am · IVIG Infusions in Neuropathy

Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

Wed, May 15 6:49am · People with non diabetic neuropathy in Neuropathy

Ask your doctor about IVIG. There is a double blind study which I think is still recruiting which is set to prove whether IVIG can reduce/eliminate symptoms in people with SFN. It is expensive and hard to get coverage under most insurances. I have idiopathic short, long, motor and autonomic nerve neuropathy and IVIG has helped to eliminate some symptoms, slow progress on others. Worth a look as it is the best drug out there that reduces/eliminates symptoms rather than masking them.

Mon, May 13 5:36pm · IVIG Infusions in Neuropathy

I have had IVIG since consistently since August and it has reduced my symptoms by 40 to 60 percent depending on the time and dosage. The liver is constantly removing antibodies and IVIG antibodies are 50% removed within 21 days and as a result many of my symptoms would return in week four. I finally convinced my doctor to go to every three weeks to see if I had more of an effect if my symptoms didn't keep yo-yoing. It turns out it is standard practice after 3-6 months to try a reduced maintenance dose so when my doctor increased the frequency of infusions he reduced the dose by almost 60%. Unfortunately this allowed my neuropathy to advance and I had no positive response to the lower dose. I have convinced my doctor to do a trial at my original dose but on an every three week schedule. Unfortunately my PN has advanced so I walk with my legs frozen straight and after 2 doses three weeks apart the IVIG is no longer loosening up my legs. I have 2 more infusions and if I don't get better I will switch to a chemotherapy to suppress my immune system called Rituximab since my PN is autoimmune mediated. If you have a chance try IVIG. From my research IVIG has the greatest chance of reversing symptoms if it works for you and your kind of PN.