Infusions for widespread, intense nerve pain, probably due to MS

Posted by elsa @elsa, Feb 6, 2019

Yesterday I had an appointment at my local pain clinic (UW Health in Madison, WI). Each time I visit, they have me color code a diagram of where my pain is and what kind of pain it is (e.g, yellow = aching, blue = burning, red = stabbing, green = tingling, etc.) I colored in the entire back of my buttocks and hamstrings on both sides as both aching and burning. That kind of diagram is new for me because in the past my pain was much more localized. The pain PA who I saw said that that type of diagram, i.e., broad, expansive areas of burning pain, along with a description of the pain being in the skin, was what she typically sees from her pain patients who have MS. I have MS and I also have had chronic neuro-skeletal-muscular pain due to a disc injury and subsequent microdiscectomy in which the surgeon tore the dura.

The PA at my Pain Clinic ordered a lidocaine infusion which I will be scheduling. That said, I came home and did a bit of research online and found a brief article titled "4 Infusions that can help relieve chronic pain" https://www.painnewsnetwork.org/stories/2017/10/22/4-infusions-that-can-help-relieve-chronic-pain.

The 4 possible infusions are: 1) ketamine 2) Immunoglobulin 3) lidocaine and 4) stem cells

I subsequently sent a message to my pain doctor as well as my MS doctor and PCP. The MS doctor and PCP said that was a question for the Pain Clinic. The Pain Clinic wrote back and said: "the UW Pain clinic doesn't offer ketamine, immunoglobulin or stem cell treatments. You are welcome to explore those options.". This is so TYPICAL of healthcare at places other than Mayo. No real coordination between departments. Neurology refers me back to the Pain Clinic. The Pain Clinic only does lidocaine infusions so they don't try to answer the question or try to call Neurology and find out exactly what types of infusions are actually possible between the Pain Clinic and UW Hospital which serves neurology patients. Ugh! I requested an appointment with Mayo Neurology but was turned down (even though I've been a patient in the past and have graduated from Mayo's Pain Rehab program). I plan to persist and see if my PCP can call Dr. Keegan (the MS doctor who'd seen me in Mayo Neurology) and explain to him the kind of wall I'm running into locally.

Anyway, I'm writing to ask if any of you have been any experience being treated for severe neuropathic pain in the skin with ketamine, lidocaine, IVIg or stem cells? I have MS which, of course, is an autoimmune disease so I suspect IgIV might be appropriate but I really don't know.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I will tell you what I know. I do not have MS. I have peripheral neuropathy with severe ball of foot and toe pain that burns, stings, stabs, throbs, quite a bit of the time. My toes feel gnarly and often yanked at. Gruesome illness. Anyway, I have used only lidocaine patches, which help all pain, but tend to cause a type of burning of there own, different than neuropathic burning. Not the best, but still helpful. Never even heard of lidocaine infusions or ketamine infusions. I have recently considered stem cell infusions and have been researching them. The safest are from healthy born babies, using their umbilical cord stem cells. the most serious risk......the stem cells may differentiate into cancer cells. This is rare, but can happen. And, even at Mayo clinic, there is not double blind studies on stem cells and neuropathy. As far as immunoglobulin infusion, it is not a picnic, from what I here, and does not always help. The latest thing I have found helpful are the CBD oils, without the marijuana. Legal in Illinois. No dispensaries needed. They help pain quite a bit, and loosen up my utterly painful toes. God in heaven, a night mere of an illness. Lori renee

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Lori Renee, Thanks for sharing what you know. You might want to inquire about ketamine infusions. I'm told they last 1 - 2 weeks and take about 1 hour to do. Depending on the type of insurance you have and the level of pain care you can get through your local provider, infusions might be preferable to using lidocaine patches. I imagine patches aren't all that easy to keep solidly attached to your feet.

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The patches totally stay on, but have a burning side effect. (Just what someone with neuropathy needs!) I will talk to my neuro doc about the ketamine. Thanks for the info!!!!

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@lorirenee1

The patches totally stay on, but have a burning side effect. (Just what someone with neuropathy needs!) I will talk to my neuro doc about the ketamine. Thanks for the info!!!!

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Oops. There's a typo in my previous reply. I meant to write that lidocaine, NOT ketamine, infusions last 1 - 2 weeks. I don't know anything about ketamine infusions. Sorry for the confusion.

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I had infusions for RA. It recalled helped. I guess they only do them for short. My infusions usually look lasted maybe 5 hrs. They make sure you are comfortable. They must run slow according to my dr.

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Thanks for the clarification!

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I just started looking into Stem Cell therapy for PHN from shingles in 2004. On Medical Marijuana for five weeks. Still in constant chronic pain.

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@elsa. I have neuropathic and bone pain from chemo and two stem cell transplants for lymphoma. I also get IVIG to help with a compromised immune system. I don’t feel IVIG does anything for my pain issues...if anything it can sometimes make it worse. Granted I don’t have MS, but I am very informed on my therapies and I have not seen anything about IVIG improving nerves.

I had bone pain from my autologous transplant (using my own stem cells), it only got worse with second allogenic transplant from sister’s cells...so I have my doubts about stem-cell therapy for nerve-related pain. There has been some success with stem cell therapy for joint pain and ligament/tendon injuries, but it’s not a medically accepted therapy yet for nerve pain. Most places offering stem cells for nerve pain are chiropractors with a lower threshold on treatments...insurance won’t pay for it either.

Have you tried Gabapentin, Lyrica or Cymbalta? Some people get relief from these. Also massage which increases blood flow and loosens muscles that tense from pain.

Ketamine is a strong medication used for anesthesia, much like a pain med. I have not heard of IV lidocaine, but it might help...though I would think it would work best administered to the location with the pain. Steroid injections might also help especially if it’s related to nerve impingement from inflammation (maybe from botched surgery?).

Hope my experience helps....Best of luck!!

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@ckeys

@elsa. I have neuropathic and bone pain from chemo and two stem cell transplants for lymphoma. I also get IVIG to help with a compromised immune system. I don’t feel IVIG does anything for my pain issues...if anything it can sometimes make it worse. Granted I don’t have MS, but I am very informed on my therapies and I have not seen anything about IVIG improving nerves.

I had bone pain from my autologous transplant (using my own stem cells), it only got worse with second allogenic transplant from sister’s cells...so I have my doubts about stem-cell therapy for nerve-related pain. There has been some success with stem cell therapy for joint pain and ligament/tendon injuries, but it’s not a medically accepted therapy yet for nerve pain. Most places offering stem cells for nerve pain are chiropractors with a lower threshold on treatments...insurance won’t pay for it either.

Have you tried Gabapentin, Lyrica or Cymbalta? Some people get relief from these. Also massage which increases blood flow and loosens muscles that tense from pain.

Ketamine is a strong medication used for anesthesia, much like a pain med. I have not heard of IV lidocaine, but it might help...though I would think it would work best administered to the location with the pain. Steroid injections might also help especially if it’s related to nerve impingement from inflammation (maybe from botched surgery?).

Hope my experience helps....Best of luck!!

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Thanks very much for your response; it was enlightening.

I used to get steroid injections at L5-L6 but they stopped working. I do take 1800 mg/day of gabapentin. I also take CBD oil and low-dose naltrexone. I'm sure the gabapentin helps a little but I'm less sure about the efficacy of CBD oil and low-dose naltrexone. For 8+ years I also took morphine and hydrocodone but it's now been almost a year since I've taken any opiates.

I gather that lidocaine infusions are a pretty new pain therapy. Here's a 2017 article about them:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323245/

I haven't tried massage but hope to do so. I've also tried dry needling which has been helpful for the neuromuscular part of my pain.

I wish you all the best with managing your pain.

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My doctors are currently considering ketamine infusions for me. I have a doctor at a pain clinic but I also have a doctor who is an integrative pain specialist and they work together on my treatment. I've been in terrible pain for 15 years and so far this combo of doctors is the best. I saw and read the same article that you found but still had questions afterward just like you. I do currently take an oxyticin troche and a ketamine troche. They dissolve under your tongue and somehow they work together to help alleviate your pain. I was on a fentanyl patch for many years along with tramadol and the oxytocin/ketamine combo pretty much beats the pain relief. I was so afraid to get rid of the patch because it was my only significant and long lasting pain relief but am finding that these medications almost work better. They are also opioid alternatives.

Please let me know how your infusions go. Good luck to you and take care!

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