Lambert-Eaton News Forums Forums Diagnosed: What now? Seeing a New Neurologist

  • Seeing a New Neurologist

    Posted by ashley-gregory on May 26, 2022 at 12:21 pm

    Hey everyone! 

    I have finally found a neurologist who is experienced with LEMS! 

    I have heard great things about her so I am hopeful that my appointment will go well. She is in Richmond at VA Commonwealth University, a pretty big teaching hospital.

    My appointment is set for July and I will keep you updated on how it goes! 

    I was also told that the same practice will be having a POTS specialist joining them at the end of the summer and I may be seeing him as well. 

    I am also considering seeing a rheumatologist at VCU as well. I think it doesn’t hurt to have a second opinion and my increasing autoimmune symptoms have been an ongoing battle for me.

    I still don’t know which disease is causing my flare, and I find myself asking “Is it LEMS, or is this my lupus?” So hopefully seeing both specialists with a fresh set of eyes can lend me advice and guidance on living with both.

    How do you get prepared for an appointment with a new specialist?

    I’ll be working on a list of questions and symptoms to take with me to our visit.

    ashley-gregory replied 1 year, 6 months ago 4 Members · 10 Replies
  • 10 Replies
  • david1949

    Member
    May 27, 2022 at 10:54 pm

    Great news for you. I will be interested to see how your visit goes. I had requested my LEMS medical records from Sentara, to send to VCU, but they sent me over 1000 pages of repetitive information and didn’t send me what I needed. After my body settles down after the recent cervical spine surgery I will try gathering records from Sentara My Chart.

    Dr. G has backed off from the not LEMS gibberish at least until I recover from surgery.

    Good Luck with new neurologist.

    David

  • desiree-taliancich

    Member
    May 28, 2022 at 3:04 pm

    Ms Ashley, I’m so sorry to hear that your condition has been uncontrolled here for a while but I’m so very glad that you have found a new neurologist. I’m hoping that they can tweak what needs to be tweaked very quickly. Regarding adding a Rheumatologist to your team, I have to completely agree. Mine has been a part since I showed symptoms of autoimmune disease. There is a lot of literature about POTS being autoimmune of course aside from autonomic. I finally got to start IVIG and now a hematologist is also involved for monitoring labs. At my last visit with my Rheum, he started discussing seizing the production of the antibodies so I would not begin to progress to other autoimmune diseases. My wonderful neuro was absolutely on board. She explained that she prefers to treat in a step by step process and since I was having many symptoms, her focus was on symptom control. I have now been started on an immunomodulator in an effort to suppress the production of antibodies all together. She did explain this may take anywhere from 6 months to 1 year. We will see. God willing I’m not going anywhere for a while.
    God Bless you and may you get back on the road to some normalcy very soon.

  • lucia

    Member
    May 31, 2022 at 9:29 am

    Hola Desiree, me interesa mucho lo que te diga este nuevo neurologo y el control actual por un reumatólogo paralelamente. A mi esto no me lo han propuesto y considero una idea que debiera estar presente en todos los casos de lems y acotar los síntomas para evitar la producción exacerbada de anticuerpos. Seguiré tus informaciones y te deseo que sea muy productiva tu determinación para encontrar un nuevo neurologo y solicitar una segunda opinión que aclare todas estas dudas que mejoren tu calidad de vida. Lucia,

     

    • ashley-gregory

      Member
      June 1, 2022 at 7:48 am

      Translated:

      Hi Desiree, I am very interested in what this new neurologist tells you and the current control by a rheumatologist in parallel. I have not been proposed this and I consider it an idea that should be present in all cases of lems and limit the symptoms to avoid the exacerbated production of antibodies. I will follow your information and I wish you to be very productive your determination to find a new neurologist and request a second opinion that clarifies all these doubts that improve your quality of life. Lucia

      • ashley-gregory

        Member
        June 1, 2022 at 7:53 am

        @luciag

        Hi Lucia,

        I think this message may have been intended for me. I will be sure to update you on what the new neurologist says! My Dr. did not write a referral for a second opinion from rhematology, he wants me to see the new neurologist before we he makes another referral. My quality of life is pretty good for a LEMS patient, although I still find myself wishing for more and to be closer to my pre-LEMS self.

         

        Translated:

        Hola Lucía,

        Creo que este mensaje puede haber sido destinado a mí. ¡Me aseguraré de actualizarlo sobre lo que dice el nuevo neurólogo! Mi Dr. no escribió una referencia para una segunda opinión de rematología, quiere que vea al nuevo neurólogo antes de que hagamos otra referencia. Mi calidad de vida es bastante buena para un paciente con LEMS, aunque todavía me encuentro deseando más y estar más cerca de mi yo pre-LEMS.

         

  • ashley-gregory

    Member
    May 31, 2022 at 11:32 am

    @dpmitnick

    I will definitely keep you updated on how my appointment goes! How is your recovery going from your surgery? Hopefully he will stay backed off of the “not LEMs” talk, I know how frustrating that is!

     

    @deztali1980

    Sorry for the miscommunication, I do currently see a rheumatologist here for my Lupus. But he and my past neuro do not agree on a treatment plan, so I was considering getting a second opinion from VCU.

    I’m glad you finally got started on IVIG! That is wonderful news! What immunomodulator did they start you on if you don’t mind me asking.

    Thank you for your well wishes and kind words! Hopefully IVIG and your other medication will get you back on the right track soon!

    • desiree-taliancich

      Member
      May 31, 2022 at 11:37 am

      I have been started on Azathioprine or Imuran. I’m giving myself a few days to adjust to the added mestinon then will start it.

      • ashley-gregory

        Member
        June 1, 2022 at 7:59 am

        @deztali1980

        Please keep us updated as to how you do with the addition of mestonin and Imuran. I’ll check back with you in a few weeks too! 🙂

  • david1949

    Member
    May 31, 2022 at 3:19 pm

    Ashley,

    Surgery recovery would be smooth if I could only get in  a regular sleep pattern. Between the hard neck brace, CPAP and insomnia, sleep is not my friend right now. I had IVIG infusion today and slept there for over an hour, which is most irregular for me. There is no pain in my neck right now. Still having nerve issues in right arm. Thanks for asking.

  • ashley-gregory

    Member
    June 1, 2022 at 7:57 am

    @dpmitnick

    I’m so sorry to hear that! Sleep is so important to us, especially during recovery! Have you tried anything to help you sleep? Are you receiving steroids during your recovery or infusion? I know those greatly affect my sleeping habits and often I have insomnia after my infusion from them. I am a big fan of melatonin and CBD oil, both keep me on a regular sleep cycle. Usually I take them together and they take about 30 mins to kick in but then I sleep soundly. I normally take 5mg melatonin and 25mg CBD, but on infusion days I increase my CBD to 50mg and that has helped alot! Hope this might help you too! They also have a wonderful sleepy time tea and a stronger version called “extra sleepy” which also works wonders!

    I’m sorry you are still having nerve issues with your arm, hopefully that will settle down in a few weeks as you recover.

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