So I Wait Some More…

    • Anonymous
      January 6, 2010 at 6:05 pm

      Hello All,

      Had an appointment with the neuro that I originally saw several months ago. Felt like I should go back and see him, bring test results, office notes, etc., for him to review. I have an appointment with a neuromuscular specialist in late February, but thought I’d run everything by this doc and see if there were any additional tests he thought would be useful to have done prior to seeing the NEXT doctor.

      Well, I never saw the neuro…only saw his PA. She’s a very nice young lady, listened intently, and showed a lot of empathy, but knows nothing about CIDP or any of its variants. The neuro specializes in MS, so that’s probably about all she’s trained in as well.

      So, I wait.

      I explained to her that my primary concern is the loss of strength in my left arm, and how it’s progressing fairly quickly. Told her that I’m also concerned by the increase in pain, which I think may be the demyelination spreading. Asked about Lyrica, and whether masking the pain without treating it is really a good idea. She really had no answers.

      The most beneficial thing from the visit was her very, very brief physical exam. While it’s not a good thing, she could not get any reflex responses in either elbow or either wrist. And, believe me, she tried! A LOT! Beat the crap out of me with her little mallet.:p She seemed very surprised by that, but not surprised enough to go get the neuro. But she will, at least, put it in my records, so I can take that with me.

      I’m planning on one last ditch effort before my next appointment. I have not yet written to Dr. Lewis, but am planning to. As I had such a bad experience writing to the local “expert”, I’ve been hesitant, but at this point I feel I have nothing to lose. Everything seems to be pointing to Multifocal or Upper Limb CIDP, and he’s the expert. So what if one more doctor thinks I’m a pain in the butt!;)

      Thanks for your support.


    • Anonymous
      January 6, 2010 at 9:23 pm

      Just an FYI, if that ever happens again you can refuse to see the PA & request the neuro. If you make an appointment with him then that is who you are to see.

      I have waited MANY times to make sure I see the real dr & not the PA.


    • Anonymous
      January 7, 2010 at 11:44 am

      I agree with Kelly,

      we wait and wait for these appt then we don’t even get to see doctor?

      I would tell the PA that you would rather wait and see the doctor.

      Rhonda from Canada

    • Anonymous
      January 8, 2010 at 12:31 am

      Hi Elmo,

      Last November the same thing happened to me. I got angry
      though and refused to see the PA. I had waited months to
      see this Neurologist, not his PA. I got another appointment
      a week later with the Neurologist. Now, it was inconvenient
      to go all the way back, but at least I saw the Doctor I wanted
      to see.

      Also, today I had the same discussion with my Rheumatologist
      about Cymbalta and Lyrica. He said, “I have no problem with you
      taking Cymbalta to help with pain control. Just remember that
      you are only masking the pain though.” He went on to say that
      his goal is to find out the reason for the pain and treat it.

      Elmo, I am on Cymbalta and it has really helped me with pain
      control. Before, I needed meds every 4 hours around the clock.
      Now, if I take Cymbalta I barely need my Tramadol or Vicodin.
      I am truly amazed by the results.

      I hope you call them back and demand an appointment with
      the Neuro you had thought you were going to see. That is
      the least they can do for you. Sorry for the way you are being
      treated. It’s not fair.


    • Anonymous
      January 8, 2010 at 1:49 pm

      Thanks, everyone. If I thought the neuro would have had something to add, I probably would have raised a bigger stink about it. But, as I said, he’s an MS specialist, and during our first meeting he made it pretty clear he felt this was out of his range of expertise. I guess I went back to try and get some positive feedback, and try and get an expert opinion about additional tests.

      More than anything, I was probably looking for a friendly face. (sigh) 🙁

      I’m working hard to NOT get my hopes up for the appt with another new neuro on the 25th of February. I am going to go in expecting to be patted on the head again and sent on my way. 😡 I’ve kind of decided that unless I’m willing to wait until things progress a LOT more, that I will not be taken seriously, at least within Utah, so my next step will be to do what I can here, and save money to see an out-of-state doctor. One has already suggested sending me to Mayo/Phoenix, but I can’t afford that right now. Hopefully, if the economy cooperates, I’ll be able to save enough to maybe see the doctor in SoCal that Ken and Tara are so fond of. I could drive there in 8-10 hours, have friends I could stay with, and am not afraid to eat at Denny’s for a few days! 😮

      So, we’ll see what happens, and I’ll start saving my pennies… 😀

    • Anonymous
      January 8, 2010 at 10:39 pm

      Hi Elmo,

      I just wanted you to know that I called Dr. Sahagian’s office in Encinitis,
      CA today. I talked to his office manager for awhile and then she told me
      that the Doctor has some personal problems. He will be out of the office
      a lot in the next few months. So, I felt lucky to get a March 25th appointment.

      She said that none of the other doctors in the practice have the
      experience with neuropathies that Dr. Sahagian has. So, I decided
      to wait to see him.

      She asked a lot of questions and was very professional. We live about 3 hrs
      from his office when traffic is at its best, but it is worth it. Hopefully, I can
      get a confirmation of my diagnosis.

      Anyway, call soon if you want to see him. Hopefully, you can still get a
      March apt too.

      Good luck.
      Sandila :rolleyes: