Treatment for Chronic Pain

My husband has been having some neuropathy, and my sense is that his doctor at Oakland Kaiser, Kara Durand, has been pretty thorough.  We're still working on it.

In general about neuropathy:

I broke my neck many years ago with a kind of fracture (compression fracture) that left my spinal cord essentially untouched. (This is more common than you might think.)  A year later (age 23) I had a spinal fusion where my cervical spine was unstable, and about 12 years after that, another surgery, after which a bunch of stuff went wrong and I was partly disabled for years.  (I'm OK now.)  I learned a lot about medicine and doctors in that time period.

Neurological symptoms are inherently vague and hard to diagnose, which can make some doctors dismissive. In my case, there was more going on than just my neck, and it took a lot of looking before the various issues got nailed down.  And a quarter to a half of neuropathies are idiopathic, that is, very hard or impossible to diagnose.

So here are my suggestions:

Most doctors read faster than you can talk, they respect the written word, and they won't generally have time before the appointment to familiarize themselves with your case.  I've found that I gain time, respect, and even gratitude from the doctor if I start the appointment by handing them a tidy, typed, one-page (not longer) history. Can't tell you how many times I got told that I was "an imaginative young woman" before I started doing this.  Format your history much like a resume.  At the top, your name, age, and Kaiser number.  Below that, why you're seeing the doctor ("undiagnosed neuropathy").  Below that, a list of whatever the tests they have done and the results -- use the technical terms and the numbers. For example, you say you're not prediabetic -- list the test results that prove it. List all medications and supplements you take, with dosage.  At the bottom of the history, put family medical history.  It's not a bad idea to have a friend with you at that appointment -- if you feel supported, you may do better at holding back your feelings.

Some questions: are you sure you're dealing with peripheral neuropathy and not a central nervous system problem, or maybe both? Have they taken a really good look at your spine? Have they done a lupus panel and thyroid tests?  Have they looked for infections like Lyme disease that are associated with neuropathy?  (there are a lot of infectious organisms that can cause neuropathy.)  Have they tested for heavy metals, and excesses and insufficiencies of nutrients?  A friend of ours developed neuropathy from drinking well water that had high levels of manganese, which is an essential nutrient but toxic at high levels.  Is it possible you've been exposed to organic toxins?  Have they done a blood protein electrophoresis test? My husband's electrophoresis test was positive, which can be a sign of myeloma (which can cause neuropathy), which led to a CAT scan, which didn't turn up myeloma but did lead to them finding a small tumor on his kidney that may or may not have anything to do with his neuropathy. 

Be prepared for multiple causes.  My non-scientific belief is that the brain can clean up signals from the body to a point.  If there is an issue in one place, maybe you won't notice, but if another issue elsewhere crops up, the two together will produce symptoms even if one of the issues alone would not.

Do a little research on each of the tests they do -- some are better than others. At one point I went to a new-age doctor, a bit of a quack, who did a ton of tests, and found autoimmune thyroid disease that the other docs didn't.  I had the symptoms, it runs in my family, but the usual hormone test was negative, likely because the condition naturally waxes and wanes. The new-age guy's auto-antibody test, however, was positive.  (I imagine it's a much costlier test than the usual hormone panel.)

So, overall, try to be prepared for a long process of testing, being insistent about it, and suppressing your feelings during doctor appointments.

Finally, I'm surprised they haven't offered treatment.  There are a number of antiseizure and antidepressant drugs that help a lot.   Even if you never get a satisfactory diagnosis, these drugs can help a lot.

Good luck. Neuropathy sucks!

I'm so sorry to hear about your struggle - you are not alone! I dealt with peripheral neuropathy for years and finally found my way to a neurologist at Stanford who put me on Low Dose Naltrexone ("LDN"). It is commonly prescribed off-label for a wide-range of conditions from post-cancer syndromes to long-haul COVID to other idiopathic (unknown origin/cause) neurological phenomenon. The FDA originally approved the drug at 50mg doses to help people with opioid use disorder, but specialists across the country have recognized it's effectiveness in calming autoimmune and other conditions at low doses (4-6mg). Your primary care doctor can order it for you - have them take a look into it. It is a compounded medication that you titrate up starting at 0.5mg and going up until you feel the benefit. There is a fantastic compounding pharmacy in Pacifica called Feel Good Compounders that is very quick, reasonably priced, and can mail it to you here in the east bay usually next-day. It is not yet in the mainstream zeitgeist of clinical protocols that a group like Permanente would use. While my Stanford neurologist helped me identify and begin treatment, my primary care Family Nurse Practitioner who is my primary care provider at One Medical Group is the one who places my regular Rx orders and manages it. Because it's so low risk, it's something a good PCP will be willing to try with you. 

Secondly, if you haven't had a talented PM&R specialist look at your peripheral neuropathy, it would be worth a visit with the right person. PM&R is "Physical Medicine and Rehabilitation" - these physicians are excellent at understanding both the body mechanics, anatomy, orthopedics, and also the nervous system (many of them cross-train as anesthesiologists). There is a doc in Concord named Dr. David Suarez who is excellent. He came out of residency at Stanford and did his fellowship under Dr. Marko Bodor, who is the godfather of this stuff (Dr. Bodor's clinic is up in Napa - worth the trip). I've been treated by both of them and they're second-to-none. They may do a spinal MRI in order to get a better look at the soft tissues around your spine and if there are any compressions or disc degeneration causing the peripheral neuropathy. Dr. Bodor is internationally renown for his work (bodorclinic.com). 

Hi again- this is the person who's husband's neuropathy led to diagnosis of a kidney tumor.

Before the kidney surgery, my husband asked the kidney surgeon if the tumor might have anything to do with the neuropathy, and the surgeon said he's seen all kinds of odd things clear up after this type of surgery.  Lo and behold, a few days after surgery my husband said the neuropathy is receding.

I'm a sceptical, science-y person, so I did some rummaging around on the internet and ran into a clinical article describing a woman with severe (wheelchair) neuropathy that cleared up after a kidney tumor was discovered and removed.*  When I put the reference (cited below) into Google Scholar, I found other clinical articles with parallel findings.

Apparently there can be effects of a tumor on various body systems due either to chemicals produced by a tumor or to effects of the tumor on the immune system -- these are called paraneoplastic syndromes.  Wikipedia has a long article about them.  These conditions can be hard to diagnose because they are indirect.  The article I cited here comments that diagnosis of unexplained neuropathy should include an abdominal scan, in case there is an underlying tumor. 

I'm not a doctor and obviously don't know what's going on in your case, but you might want to mention this to your doctor.

*Yang I, Jaros J, Bega D. Paraneoplastic Peripheral Nervous System Manifestations of Renal Cell Carcinoma: A Case Report and Review of the Literature. Case Rep Neurol. 2017 Feb 20;9(1):22-30. doi: 10.1159/000458435. PMID: 28413402; PMCID: PMC5346938.

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