Anyone: UC Irvine Neuromuscular Center?

    • LMayberry
      May 1, 2017 at 6:39 pm

      I have been referred to the UC Irvine Neuromuscular Center by my neurologist to confirm the diagnosis of CIDP. I had to wait two months just to get an appointment and now have to wait four months for the actual appointment (mid-August 2017) to see a doctor. Does anyone have experience with them?

      I had hoped for a referral to Cedars-Sinai but my neuro is an Irvine grad, so I think he has a preference.

      I had five days of IVig March 29-April 2 and five days of Prednisone April 19-23, with no further treatment ordered until my neuro sees me again mid-June. I am living in a nursing home because I cannot walk, and money is running short because my insurance doesn’t want to pay for an unconfirmed diagnosis.

      I am getting very impatient.

    • Jim-LA
      May 1, 2017 at 9:57 pm

      Sounds like UCI is more pro student than patient. You may wish to contact Cedars Sinai directly to get a second opinion:
      https://www.cedars-sinai.edu/Patients/Programs-and-Services/Neurology/Centers-and-Programs/Neuromuscular-Disorders/Centers-of-Excellence.aspx

      Ask for an appointment with Dr Richard Lewis MD or Dr Robert Baloh MD. — 127 S San Vicente Blvd
      A 6600, Los Angeles, CA 90048.

    • LMayberry
      May 2, 2017 at 1:59 am

      Jim-LA:

      Thank you very much for the link and info on Cedars-Sinai.

      I am fighting many battles with several doctors right now to get treatment. Because I can”t walk, I was hospitalized for the IVig treatment four weeks ago. During that time I had daily blood tests that show that I am very anemic, so I spoke to my medicine nurse this morning about maybe we need to find out why my daily iron pills aren’t taking care of this.

      Next week, I am seeing an orthopedic surgeon about fixing my right foot. My ankle got broken December 2015 the day I was discharge from this nursing facility after recovering from a skin graft, but having lost my ability to stand or walk without extreme dizziness and weakness. The skin graft was done after getting necrotizing cellulitis of the posterior and being hospitalized for 5.5 weeks at Long Beach Memorial Wound Care Unit. The day after I was admitted, I could still walk, but after a few days of treatment consisting of multiple IV antibiotics, pneumonia and flu vaccinations, being put into congestive heart failure and getting a blood clot in my right arm from clumsy attempts at starting the IV, I lost the ability to sit up and I sure couldn’t walk.

      It had taken me a year and a half to get a probable CIDP diagnosis, but Blue Sheild of CA is not making my life very easy.

    • GH
      May 2, 2017 at 11:22 am

      Have you had the spinal fluid test? Your neuro should have ordered this as soon as he had reason to suspect CIDP.

      I have Blue Shield of California and had no difficulty getting treatment when I developed CIDP. It probably depends on the particular plan.

    • LMayberry
      May 2, 2017 at 11:53 am

      I requested and got a spinal tap when I was in the hospital four weeks ago. The protein level was in the high normal range, so not conclusive. No big change after the IVig, but a noticeable difference after the Prednisone. Being diabetic, Prednisone is not a really good option for long-term.

      My neuro just seems to be banking off in doing anything until I get seen by UCI, but my financial resources are running low. All of he delays in treatment are so frustrating. It took over a year to get a diagnosis, then another four months to get the IVig.

      Now I have the four month wait for anything else to happen.

    • Jim-LA
      May 2, 2017 at 2:49 pm

      LMayberry, you will find several forum discussions on anemia. Reading these may be helpful if you are going through a period of anemia. Simply enter the word anemia in the forum search box, click search, and it will bring up the discussion threads, freshest first.

      Here is one I was involved in: https://forum.gbs-cidp.org/topic/anemia-due-to-cidp

      Regarding your insurance, have you read your policy’s guidelines for qualification for treatment? They can be very specific and if a doctor uses the wrong terms or words to describe your condition, you will get denied. Here is an example of a Blue Shield policy covering Plasma Exchange:
      https://services3.horizon-bcbsnj.com/hcm/MedPol2.nsf

      Here is another discussion involving BCBS of Calif: https://forum.gbs-cidp.org/topic/insurance-coverage

    • LMayberry
      May 2, 2017 at 9:48 pm

      Jim-LA

      I had some one come in to tell me that Physical Therapy will,start again for me tomorrow. But I am having a hard time getting them to understand that I have poor stamina, and getting out of bed and into a wheelchair is exhausting, but sitting at the edge of the bed doing leg exercises is a good use of the short amount of time we have. So far, I haven’t gotten anyone to read the PT guidelines for CIDP.

      It is so hard dealing with multiple issues that come under the specialties of several doctors. I have Blue Shield PPO that is paid for by my former employer until I get Medicare. Then I have to battle with the nursing home. An infusion service wanted to come to the home to give me IVig, and they wouldn’t allow it, and they wouldn’t let their nurses do it, so I wound up having to go into the hospital for the infusion. I don’t think they are going to allow that for any more rounds. The infusion center doesn’t want me because I can’t walk. It is a real Catch-22.

    • Jim-LA
      May 2, 2017 at 10:11 pm

      LMayberry, when I was in the SNF they would not allow IVIg on premises. I was taken via wheelchair and medical transport to the infusion center at the hospital. The infusion center had a lift team to take me from wheelchair to bed for the treatments. When I was able to go home, I arranged for home infusions while sitting in my wheelchair.

      Having IVIg given as a “home” treatment tells our insurance companies we are home and no longer need the SNF. This is probably why your SNF didn’t allow it, they would loose revenue because they would be required to discharge you. Once you are receiving “home” treatments of any kind, you are disallowed to get those treatments at a medical facility, without losing the “home” benefits. Our insurance companies have us tangled in all these regulations that benefit them, not our health.

      Best of luck navigating all the rules and getting the treatment you need.

    • LMayberry
      May 2, 2017 at 11:17 pm

      I have been wondering if they might approve sCig that they could give me here. I am paying the SNF bill, so the insurance shouldn’t care where I’m at. It cost me $7500 a month, so I will be out of money soon, as I have been paying for over a year now. My pension, SS and disability leave me a couple of thousand short of paying the bill every month and I can only afford until the end of this month because of my tax refund. My savings for retirement are gone, and I’m still trying to hang onto my house.

      My copay for the hospital stay was $1400 for the five days, but I also had to pay the SNF to hold my bed at $250 a day. Trying to stay alive sure is expensive.

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