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David1949

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@dpmitnick

Hi everyone. This is my first post here. I was diagnosed with LEMS- type N in August, 2014. Been receiving IVIG infusion since December, 2014. As long as someone doesn’t mess with my dosage of IVIG, I am stable. My doctor added Mestonin this April because of evening weakness. Thankful to have been diagnosed after a stroke and started on the […] View
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  • Profile picture of David1949

    David1949 replied to the topic Combating Heat Intolerance With LEMS in the forum Living With LEMS 1 day, 20 hours ago

    I too suffer from heat intolerance with LEMS. I had the heat intolerance before I was diagnosed with LEMS. I remember telling my neurologist at the time about living in air conditioning and horrible sweating if I exerted any energy in the heat. This was part of his referral to the autonomic nervous system lab that was just the beginning of 7…[Read more]

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    David1949 replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 day, 20 hours ago

    Ashley,

    The 19th works for me! Thank you for trying to accommodate.  I just got released from hospital with pneumonia.

    LEMS and pneumonia are not a pretty pair. 5 days later and lots of IV antibiotics and steroids, and hard work from Respiratory Therapist, and a loving spouse got me through. I was under the care of an amazing hospitalist who is…[Read more]

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    David1949 replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 4 days, 16 hours ago

    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.…[Read more]

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    David1949 replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 4 days, 20 hours ago

    July 12th at 5 PM works for me.

    David

  • Profile picture of David1949

    David1949 replied to the topic Seeing a New Neurologist in the forum Diagnosed- What now? 3 weeks, 4 days ago

    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.…[Read more]

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    David1949 replied to the topic Seeing a New Neurologist in the forum Diagnosed- What now? 4 weeks, 1 day ago

    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…[Read more]

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    David1949 replied to the topic Where Are You On Your COVID-19 Vaccine Booster? in the forum Coronavirus (COVID-19) and LEMS 1 month ago

    I have had 3 full moderna shots and one booster. I am due for another booster but can’t get it until I can ride in car again after cervical spine surgery last week.

  • Profile picture of David1949

    David1949 replied to the topic Glucose issues with LEMS in the forum General Questions and Topics 1 month, 1 week ago

    I am pre-diabetic and my internal medicine doc and cardiologist follow my numbers closely. With a diabetic Mom (deceased) and sister and brother with diabetes, I guess my time is coming.

    Side note … had neurosurgery today to replace 2 discs in cervical spine and fused two vertebrae.  Had horrible time with breathing and swallowing after…[Read more]

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    David1949 replied to the topic Finding a new neurologist in the forum Diagnosed- What now? 3 months, 1 week ago

    Ashley,
    Here is the doctor in Richmond … actually in Short Pump. I believe he is the same one Dale is referring too. There is a whole big department at John Hopkins in Baltimore.
    David

    Kelly Gwathmey, MD
    VCU Health
    11958 W Broad Street
    Henrico, VA 23233
    804-360-4669

    vcuhealth.org

  • Profile picture of David1949

    David1949 replied to the topic Finding a new neurologist in the forum Diagnosed- What now? 3 months, 2 weeks ago

    Ashley,
    I may be fighting the same problem with a neurologist in Virginia Beach. I have been fighting him since August. Once
    Dr. C left I found a neurologist locally because I didn’t feel comfortable using telehealth since I have had emergencies during IVIG several times.
    I have had 3 appointments. Since the first one it has been a struggle. My…[Read more]

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    David1949 replied to the topic 3 1/2 moderna shots in the forum Coronavirus (COVID-19) and LEMS 4 months, 1 week ago

    You’re welcome.

  • Profile picture of David1949

    David1949 replied to the topic 3 1/2 moderna shots in the forum Coronavirus (COVID-19) and LEMS 4 months, 2 weeks ago

    Price,

    This link is to a CDC update on the 4th dose for immune compromised patients.

    It is dated February 11, 2022.

    https://www.cdc.gov/vaccines/covid-19/clinical-considerations/covid-19-vaccines-us.html#considerations-covid19-vax-booster

  • Profile picture of David1949

    David1949 replied to the topic 3 1/2 moderna shots in the forum Coronavirus (COVID-19) and LEMS 4 months, 2 weeks ago

    All, the link below is to an article from the Associated Press in today’s newspaper where I live. Very informative.  I am exploring Evusheld with my physician.

    David

    http://digitaledition.pilotonline.com/infinity/article_share.aspx?guid=26ea78a7-d8a6-4b77-a20a-d04ef49299b1

  • Profile picture of David1949

    David1949 started the topic 3 1/2 moderna shots in the forum Coronavirus (COVID-19) and LEMS 4 months, 2 weeks ago

    I have had three full moderna vaccines and became eligible for a booster five months after my 3rd full shot. There was confusion about whether I would get a fourth full shot or a booster. The CDC guidelines were vague so the staff at CVS pharmacy decided on the booster.

    Has anyone else experienced this dilemma?

  • Profile picture of David1949

    David1949 started the topic I'm confused in the forum General Questions and Topics 5 months, 2 weeks ago

    I had a virtual appointment with my new neurologist last week. As I experienced on my first visit, he is very thorough. After catching up on the past four months, he told me that he has a concern if I am actually a LEMS patient. I meet the criteria based on symptoms and initial lab work and IVIG and Mestonin are very helpful with my symptoms. …[Read more]

  • Profile picture of David1949

    David1949 replied to the topic Doing Things When You Have LEMS in the forum Living With LEMS 7 months, 3 weeks ago

    Price,

    I have multiple mobility aids so I can still get around. Short distances, quad cane. Medium distances, I use my drive walker. Longer distances, I use my battery operated scooter. We are headed to Colonial Williamsburg next week for an outing and I will use whatever mobility aid I need to get out and about.

    David

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    David1949 replied to the topic Roll call! in the forum Introductions 7 months, 4 weeks ago

    I live in Suffolk, Virginia and was diagnosed with LEMS in 2014.

  • Profile picture of David1949

    David1949 replied to the topic What age were you diagnosed with LEMS? in the forum General Questions and Topics 8 months, 1 week ago

    I was 64 when I received my diagnosis. I had a stroke in late 2013. My neurologist was concerned that I was having issues with leg weakness afterwards. Testing started in March, 2014 and was diagnosed in August, 2014.  Lucky to have an Autonomic Nervous System Lab nearby.

  • Profile picture of David1949

    David1949 replied to the topic What year where you diagnosed with LEMS? in the forum General Questions and Topics 8 months, 1 week ago

    I was diagnosed in 2014.

  • Profile picture of David1949

    David1949 started the topic Insomnia in the forum Introductions 8 months, 1 week ago

    Does anyone with LEMS have a good treatment plan for dealing with insomnia?

    I came across “479” breathing exercise and wonder if it has helped anyone.

    David

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