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    • #19910
      Price Wooldridge
      Moderator

      Our relationships with our neurologists are one of the most important in our healthcare team. Lambert-Eaton has such a huge impact on our lifestyle, mental outlook, and everyday activities. What do you do if that relationship isn’t working out or has failed?

      This is where I find myself now. My diagnosing neurologist and I aren’t doing well in our patient/doctor working relationship. It’s become fractured.

      I won’t go on at great length, but make a couple of observations. First, my neurologist hasn’t listened to me when I report my LEMS hip weakness since our last visit. The physician always says I look GREAT! Of course, I do, I’m just three days out of my IVIG. I’m supposed to look and feel great. That doesn’t cover the rest of the eight months since I saw her last. When you’re feeling good, LEMS can be ‘invisible’, even to your doctor. Because I’ve looked so GREAT the last two visits, the doctor wants to start cutting back my medication schedule at the next visit in six months. What the …..!!!! For me, this is a giant red flag. I’m terrified.

      A second problem is that my physician believes they know it all and is rigid in their thinking. There’s no room to listen to my experiences of hip weakness when evaluating me for 15 minutes. I have transient weakness in my left shoulder which is LEMS. I was told by this doctor that it absolutely could NOT be LEMS because it wasn’t bilateral. I got frustrated and polled a LEMS group. I got plenty of responses of one-sided weakness being experienced. Again, this is rigid thinking with no room to learn from the patient.

      The inability to listen and rigidity of thinking is a dealbreaker for me now. It’s gone on too long. I’m in the process of working to find a new neurologist. We all deserve to have a neurologist we are comfortable with and can work with in confidence. When I hear others talk about these types of issues, my advice is always, to be your own best patient advocate. Today I’m being my own best patient advocate for myself.

      If you’ve had issues with your neurologist, what were they and how did you solve them? Did you stick with that physician, or go find another? Please let us know in the comments! (No names please)

    • #19948
      Joyce Crawford
      Participant

      Price, I am so sorry that you are having to deal with the stress of this terrible situation. That alone can make our symptoms so much worse. When you are dealing with a doctor like you have described, it’s like nothing that you say makes any difference. You even wonder if they believe you, or maybe they are just humoring you, when you try to explain what has been going on with your body. I’ve run into way too many doctors (and other health care professionals) in my 40 year career as an RN that should have never went into the profession. The very nature of the job requires a person to be caring and empathetic, even when you are a little skeptical. The kind of doctor that you described doesn’t seem to have any people skills, much less, able to be empathetic to her patients. I have had to “divorce” more than one doctor during my search for a diagnosis and then treatment for my LEMS. Life is too short to waste our time with a bad doctor. At my appointment in April, I was shocked when my neuro NP stated that I didn’t have LEMS. I had no idea where that had come from. Fortunately, I decided to sit on it, while making a backup plan, in case they wouldn’t backdown from this ridiculous idea (I have had 4 positive blood tests). A month later I got a call (for no apparent reason) to come back to the clinic and see a new doctor. Needless to say, I was very nervous about what he might say. Instead, he was wonderful. He apologized for the misunderstanding and stated that he would be taking over my care. We had a very good discussion about how every LEMS patient is different. We just don’t fit the little information in the textbooks. Of course, how could we, when there are so very few of us for studies. Sorry to be going on so long, but you really hit a nerve. We must all stick together and support each other in these struggles. Good luck, Joyce Crawford

      • #19971
        Mary
        Participant

        Oh boy! Sorry the communication is poor but what you said came right of my diary. He does everything by the book so i really need him. He is the only dr in our area. Im thankful but frustrated.

        • #19976
          Price Wooldridge
          Moderator

          I’m learning doctor patient relationships when there is a rare disorder involved can be difficult. It is frustrating if you don’t feel you’ve got other options. I filed my grievance in the VA weeks ago. Interestingly it goes to the department head of the clinic where the problematic doctor practices for a solution. So far they’ve done nothing. I’m frustrated too.

    • #19947
      Searching4Answers
      Participant

      Dear Price,
      I feel that I have to respond about finding a neurologist who will LISTEN AND is knowledgable about LEMS. I am not sure which is more important. Good neurologists are in short supply & extremely busy. It seems like many are further specialized so even harder to get appointments. I am currently on my 8th neurologist & I am still searching for a confirmed diagnosis-hence my Searching4Answers 🙂 Some I fired, some were specialists in diseases that were eventually ruled out, so I moved on. BUT the most important was/is the relationship.When I met with my current neurologist, I prepared a “blurb” about what I expected from her-“willing to allow me to be an active partner, both in treatment & or diagnosis” and “someone who would value and respect the self-awareness that I have learned about my body to help guide treatment”. It is so frustrating, depressing, and a whole bunch of other adjectives when a doctor tells you that what you are feeling or noticed is “invalid” or doesn’t fit their concept of what you should be feeling. It is extremely stressful to find a new neurologist for several reasons.location-cost-accepting new patients-etc. But our health, how we want to live, our quality of life, all of these things, we have to be the lead on and responsible for. Forums like this help in letting us know that others have the SAME issues and problems. We are not alone. Actually, many patients of “chronic” diseases have EXACTLY the same issues, Lupus, MG, ALS. We have to stand up for ourselves with moral support from people like you and Ashley.That’s my 2cents. Sorry it was so long

      • #19953
        Price Wooldridge
        Moderator

        Thanks for your ‘two cents’! You hit on so many pertinent points. Yes, neuromuscular specialists are hard to find and seem overly busy. I know mine doesn’t want to give me more than about 15 minutes. I wonder how frustrating this is for them, because it’s really not good practice of medicine in my opinion. I appreciate your perspective and understanding too! You’ve obviously already walked the walk. I attended a webinar with Global Genes on patient doctor relationships just after I filed my grievance with the VA. It was obvious, as you note, that extremely rare disorders have the greatest difficulty finding knowledgeable specialists, willing and comfortable to work and learn together with the patient.

    • #19959
      Anngail Norris
      Participant

      I think the most important thing I learned in my quest to figure out what was wrong with me is that you MUST be an advocate for yourself. Too many people think that all doctors are godlike and whatever they say is to be taken as gospel. But they are just like you and me, with more education. There is a reason that it’s called the PRACTICE of Medicine. After 9 different doctors, not all neurologists, I was fortunate to find someone who took the time to actually listen to me. More than 15 minutes!  He has been willing to work with my other doctors to find the best solutions for my treatment.  And he values my input as well. I encourage everyone to stand up for yourselves. Don’t feel that you are “stuck” with a doctor that you don’t believe in.

      • #19961
        Price Wooldridge
        Moderator

        These are great observations, and proof that good doctors are out there who do ‘practice’ medicine. I’ve got my fingers crossed I get lucky and find one too!
        Thanks for your perspective!

        • #19970
          Alan
          Participant

          After reading everyone’s posts and replies, I am discouraged and inspired.  Reading about everyone’s experiences with their doctors is very insightful and eye-opening.  It seems I am also at a crossroad with my Neurologist.  Her eagerness to get to a diagnosis has abated and I find myself waiting weeks for tests she wants me to get and even longer to get a referral to UCSF.  At the beginning she and her staff would make comments like, “you are our top priority patient.”  But now, a few months in, I feel like a bother calling them on the phone.  I hope I get lucky enough to find a healthcare provider who won’t look passed invisible symptoms and see me as a person in need of sincere medical attention.  Thank you all for your words and providing a safe place to share.

          • #19977
            Price Wooldridge
            Moderator

            You are welcome! That would upset me if I felt I were being dismissed or marginalized. I’ve heard comments like this before. I hope you will continue to advocate for yourself and get the attention you need and expect from a good medical practice.

    • #19981
      David1949
      Participant

      I think the key is getting a referral to a doctor affiliated with an Autonomic Nervous System Lab. I was fortunate that my neurologist was part of the Neurology Department at a large teaching hospital that had such a lab and doctor who specialized in autonomic nervous system diagnoses. He has since closed up shop and moved to the Cleveland Clinic. From referral to diagnosis was 7 months.

      Google Where are Autonomic Nervous System Labs?

      David

      • #19983
        Price Wooldridge
        Moderator

        @dpmitnick I think that’s a good way to find a neuromuscular specialist. In my area The UT Southwestern Neurology clinic has neuromuscular neurologists. The one I’m trying to leave practices there 3 days a week. I’d like to hope that the VA can send me out for someone.

    • #20017
      DCarpenter
      Participant

      Hi Price, I could have written your narrative.  I have complained about hip/thigh pain since my diagnosis, and my neurologist dismisses my complaint, and esp. since the Left is worse than the Right. Suggests it is orthopedic related, but I tell him I did not have this until LEMS.  I had a reaction to Mestinon? or Firdapse? 30 min after taking the higher dose he prescribed… My severe reaction included entire body pain/numbness/paresthesia Head, back, legs, ears, chest arms, BP 170/110, extreme diaphoresis. He said that he had not seen this in his 35 years of practice, and suggested it was “anxiety”. The ED doctor (not surprisingly) did not know about LEMS, but suggested I hold the dose, which I did. It eventually went away, and I started adjusting my own dosage, which as helped thus far.

      My issue is balancing a compassionate bedside listener, to someone who has extensive experience treating LEMS, which is a rarity. He has been much more aggressive than the hospital where I was evaluated and diagnosed, added two other therapies, so I currently am staying with him.

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