Advice about Kaiser Oakland
Parent Q&A
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 brought old frames into the optical shop at Kaiser in Oakland. They did a fine job and seemed to be reasonably priced.
Hi! Welcome to the area :) My ob-gyn is wonderful and I really highly recommend her: Angela Shay Lee.
I had Renée Perry as an OBGYN for years and enjoyed her. She was always personable and friendly. She helped me through an ectopic pregnancy which was tough for me, so I’m grateful to her for that.
I recommend Nancy Palmer for your family medicine doc. She's been my primary for awhile now and I really like her. I did actually know her socially first (mom's group!) and I switched to her because she's so smart and has such great energy.
I can't recommend a good gyno because mine keep moving or retiring! So weird. It's happened 3-4 times over the past 15 years that I've been here. Weird. I don't even think I currently have one anymore... Oh, well. Maybe your post will turn up some good rec from fellow Mamas. Good luck!