To Louise K LA doctors

Discussion in 'Fibromyalgia Main Forum' started by kirschbaum26, May 28, 2006.

  1. kirschbaum26

    kirschbaum26 New Member

    Dear Louise:

    I live in San Pedro, CA. I have gone through nearly 20 years of doctors in LA County. I was dx (by my long term PCP) with FMS about 5 years ago after a bad car accident. She seems very up to date on FMS and tells me that she has lots of patients with it, as well as many of the same other problems I have. Her name is Dr. Evelyn Dowell and she is in Torrance.

    I also see a good rheumatologist. His name is Dr. Ken Bulpitt. He is fairly young, and willing to try just about any reasonable treatment. I have some liver problems, so could not take the usual RA drugs. I started on ENBREL and it worked well for 4 months...then one day it just stopped working. Now on Humira...not sure if I am having bad side affects, or just a virus...but no overnight improvement like with prednisone and ENBREL.

    Have not done the natural route...but I have tried to change my diet and do water exercises and try to swim every day, which keeps me going.

    I have a bunch of other issues going on, which are most likely related. Right now I am dealing with constant bleeding, and expect to have to have a D&C next week. Fun. My labs are also all over the place, so I went to an endocrinologist a few months ago. He ran some tests, and some values were out of normal, and thought I might have either Congential Adrenal Displaysia or Cushing's Syndrome. Further tests are not pointing to either of those, but something is not right.

    I have been to a LOT of doctors in LA. Let's see, there was a Dr. Simon at a pain clinic in Torrance. Not sure if he is still around or not. I had dozens of epidural and steriod shots. I also saw a Dr. Carden at Centinella Hospital and had more epidurals and steriod shots, and even had some nerves "frozen". I also went to Kerlan-Jobe many years ago, and had multiple diagnoses from them...nothing of which helped. Let's see, there was also a Dr. Dorr, who told me that I needed to have a hip surgery to buy me 10 years before I had to have my hip replaced. That was 15 years ago, and I did not have either surgery. I also saw a Rheumatologist in Long Beach way back in 1995. Dr. Wallace. He put me on prednisone for 5+ years. Wonder drug, but no idea how much damage I have done to my body.

    I also have seen Dr. John Stratton and Dr. James Loddengard in Torrance. They are orthos and I like them both. I went to Loddengard for a second opinion for surgery on my neck and he really went out of his way to explain what having neck surgery (including fusing 3 vertabrae) would do to me at age 30. He told me to come back when I could not turn my head.

    I would love to share info on any other treatments or doctors you have tried and had any success with.

    Thanks.

    Ingrid


  2. LouiseK

    LouiseK New Member

    Well, your situation seems very different from mine. I have a severe case of CFS which was preceeded by FMS and Sjogren's Syndrome so I need professionals willing to deal with those things -- it seems like they are more willing to deal with other, peripheral issues (for instance, I have prolactenemia, disc disease, neuro issues, etc. -- even the Sjogren's Syndrome makes them light up) which seem easier for them but never get to the heart of the CFS/FMS.

    I just went to Wallace's protege, Hallegua who took my money and told me he sees FMS patients but not CFS -- hello?? What can something like that even mean?? He did then admit that at least 60% of FMS patients also have CFS . . .etc. etc. Bunch of jibberish. Neuro, endo,ortho etc. just want to deal with their own one little symptom which is okay but not going to get me well. My PCP has hung in there with me with the palliative medications and I thank her for that but she doesn't know anything at all about this disease or human chemistry or nutrition so it is just some symptom management.

    I need a killer naturopath and a nutritionist who knows something about how nutrients are actually utilized by cells and what crosses the blood-brain barrier. In other words I need to dig deeper into the hormone and chemical issues along with the cell issues.

    I'll let you know what, if anything, I find. It's LA; there must be people out there . . .I have just lost my job due to this illness and am giving myself a year off to concentrate (ha ha) all my energy (ha ha) on getting well. At the end of a year I will be flat broke so I am really "going for broke" as they say . . .

    Stay tuned . . .

    LouiseK