Looking for a great Kaiser Oakland or Walnut Creek doctor or Osteopath? Someone with knowledge of Autoimmune issues, thyroid, allergies, etc?

Hello all,

I am seeking advice, reviews of Kaiser doctors (Oakland or Walnut Creek preferably (I'm in Berkeley) but I can drive further if needed), or even specialists in other HMOs/independent. I am looking for doctors who have a knack for difficult cases. I need a diagnosis detective! I'm willing to pay out-of-pocket for someone outside of Kaiser if I have to.

I'm 33. Eat healthy, have always tried to take good care of myself. But I have ongoing chronic health challenges that I have spent literally the past 13 years trying to understand and conquer. After many years, many doctors and many questions (and many lab tests), my doctors seem to have come to the end of the line. We do know a few things. I have Carpal Tunnel Syndrome, both wrists, moderate to severe. Had this since I was 19 with NO reasonable explanation as to WHY (No repetitive typing or clerical computer work, very diverse activities at work (nothing repetitive or overly strenuous on my wrists!), I'm very conscious of my health and activities). I now have permanent numbness and weakness in some of my fingers, and very bad weakness and pain in my wrists and hands. I was diagnosed with Irritable Bowel Syndrome years ago (I had Candida overgrowth that one of my previous doctors treated me for successfully) many years ago, I control this *mostly* effectively with a clean, mostly organic, mostly Paleo, dairy-free diet. Tested for Celiac but the tests came back negative. Tried Gluten-free diet anyway for many years. I have cysts in my hands (had an MRI, it came back "inconclusive"), calcification in my shoulders (causes pain and impingement in both sides), arthritic changes in my shoulders and hands. Eczema-like rashes on my fingers on both hands, with sores that get infected (no matter HOW HARD I try to keep them clean, and I do EVERYTHING including avoiding water, wearing gloves most of the day, etc.) and don't heal for days or weeks. Tried every cream, lotion, oil and ointment I can get my hands on from prescription steroids to natural/organic options (nothing works). I test with high blood phosphates and *almost* high calcium (at the highest end of normal for my age group), tested positive for a few antibodies including Anti Scl-70 and ANA. My weight fluctuates. I am constantly exhausted. My period is irregular, with WAY too heavy bleeding (I've had 2 kids). Low blood iron anemia even though I eat TONS of iron rich foods. Migraines, headaches. Rashes. Cystic acne. Chronic Dry Eye. Too many symptoms to list them all.

If you go here: http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/  ... I have many, many of them.

My doctors have considered various diagnoses including Hypothyroid, Sarcoidosis and Scleroderma. They say I don't fit all the criteria. My TSH and T4 test low to normal, and my T3 tests normal. I have asked them to test Reverse T3, but they say Kaiser will not order this test.

After years.. the answer I'm getting is basically different variations of, "well, you have some kind of autoimmune issue.. but we don't have enough to diagnose you."

I need answers. I want my life back. I'm considering going on the AIP (AutoImmune Protocol) diet. I want a diagnosis first, I want to know what is going on, and want to make sure I'm not missing something really serious.

I would appreciate any and all advice and recommendations. Thanks!

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I would suggest a completely fragrance-free lifestyle. Most people don't realize how their fragranced cleaning and personal care products affect the. Also, stay away from new carpet, fresh paint, etc. 

You might want to try crowd diagnosis. Sounds weird, but has worked in some cases. https://www.crowdmed.com/

I am wondering if anyone ever suggested the possibility of CFIDS (also know as Chronic Fatigue Syndrome), or Fibromyalgia? Check out www.solvecfs.org and see if anything rings true. CFIDS is know for fatigue, muscle pain, insomnia, digestive issues, post exercise malaise, etc but it can also cause unusual symptoms like yours. I have CFIDS and I have quite a few of the symptoms you listed. I’d also like to suggest seeing my holistic doctor, Marcey Shapiro on Solano Ave in Albany. I’ll tell you up front she is expensive, doesn’t take insurance and is hard to get in to see - with that caveat I really recommend her. She is a very experienced doctor and is very knowledgeable about alternative medicine. I use her as a consultant to supplement my traditional medical care. I have found her much more helpful than traditional doctors. She’s kind, smart and very competent.  Good luck!

There is an expert on Scleroderma at UCSF.  You could request a referral to see her because your doctors are questioning the scleroderma diagnosis.  It is a rare disease and hard to diagnose.  You could have more than one disease so all your symptoms may not perfectly match one diagnosis, but it sounds like you have an autoimmune disease.

Hope someone responds with a Kaiser recommendation but I'm doubtful. KP tends to view the parts not the whole. My adult daughter saw 4 KP specialists for a panoply of symptoms from migraine to IBS to congestion but got nowhere. She finally paid out of pocket to see Myrto Ashe MPH MD http://www.unconventionalmedicine.net/ --an integrative medicine practitioner who made a thorough assessment of her health and all of her symptoms and she's doing remarkably better under Dr Ashe's care and treatment plan. You might want to get an initial consult. Hope you get relief.