• Introductions

    Posted by Ashley on January 25, 2020 at 11:32 am

    Good morning all!

    Welcome to the Lambert Eaton News forums! I just wanted to say hello and tell you a few things about myself. I look forward to learning more about each and every one of you!

    My mom passed away from breast cancer when I was 15 after a several year long battle. So I decided to dedicate my life to helping others and graduated nursing school in 2014. After that, I began working full time as a Registered Nurse in the operating room. I am lucky enough to still be able to work full time and I count my lucky stars for that!

    I was diagnosed with Lambert-Eaton Myasthenic Syndrome in September of 2016. I had pneumonia in the fall of 2015   and everything went downhill after that. After my treatment ended for pneumonia, I started having a lot of vague autoimmune symptoms. Suddenly, I had acid reflux all the time. I would drink water and have acid regurgitation If I laid down.

    I was sent to a GI doctor who told me that I was “too stressed” and told me I needed to be treated for anxiety although I knew that wasn’t the case. At this appointment, my pulse was rather high and he pointed it out that I was in the 140s. I attributed it to being stuck in traffic before the appointment. I went to several other doctors and began to pay close attention to my pulse rate, which was always pretty high, and began to notice that I was trending in the 140’s resting. I then started having more autonomic related symptoms to include heat intolerance, near syncope, fatigue that preventing me from doing many of my daily activities, and went into SVT (Super Ventricular Tachycardia) several times before someone starting taking me seriously.

    My “sentinel event” was luckily at work in April of 2016, I went into SVT taking a patient to our recovery room. I was sent to the emergency room for a full work up, at this point the ER doctor told me he was concerned I had something called “POTS,” after  several tests were ran. I was discharged a day later and followed up with a cardiologist who confirmed that I did have “POTS” or Postural Orthostatic Tachycardia Syndrome. After a holter monitor test, I found out my pulse was going into the 200’s when working out or exerting myself. Luckily for me, a neurologist at the same hospital specialized in POTS and disorders of the autonomic nervous system (Dysautonomia) and I was sent to him to figure out my “Cause of POTS.” In September, after a tilt test, EMG, Small fiber nerve biopsy, glucose tolerance test, gastric emptying study, and 14 vials of blood were collected I was officially diagnosed with Small fiber neuropathy and Lambert-Eaton Myasthenic Syndrome. I quickly began treatment with IVIG in October of 2016, and have been lucky enough to return my almost baseline with a few adjustments and management with medications.

    Ashley on the day of her “Sentinel Event” in the Emergency room.

    I consider myself truly lucky to have such a “short” diagnosis time frame because I worked in the hospital system with each and every doctor I saw, and I know many who have waited several years for a diagnosis, I know I am not the norm when it comes to diagnosing a truly rare disease.

    In my spare time my passions are spending time with my Australian Shepherds (Ava and Jake), hiking and exploring state and national parks, reading (especially historical fiction), restoring antique furniture, gardening, visiting breweries and wineries, traveling, board games, attending concerts, and spending time with my family and friends! I am a big fan of country music and try to attend as many concerts as I can.

    I am also very active with my professional nursing organization and currently hold two spots on the board. I try my best to be an advocate for all my patients and I feel my personal experience with chronic illness has helped me to become a stronger one!

    My goal is to encourage others with chronic illness and prove that we can still achieve our dreams and change the world if we want to! I also want to decrease the stigma around chronic illness patients and show that we can do anything we set our mind to! I also get excited about raising awareness about rare diseases in general and love teaching others about our extremely rare illness. You often hear a saying about rare patients and that we have the nickname of a zebra, but I believe that we are even rarer so I refer to us “LEMons” as unicorrns! When life give you LEMS, you have to make LEMonade!


    Ashley and her dogs, Jake and Ava.


    Jake and Ava enjoying some time working in the flower beds with their mom

    tescha replied 4 years ago 5 Members · 18 Replies
  • 18 Replies
  • price-wooldridge

    Member
    January 25, 2020 at 10:35 pm

    It’s great to hear your story, Ashley!  You have overcome so much. Thanks for sharing!

  • dawn-debois

    Member
    January 26, 2020 at 8:36 am

    Ashley,

    Your resilience and strength in juggling all that you do is going to be of benefit for all LEMS and multiple autoimmune syndrome patients to witness here in the forums as well as in real life. It can all be so overwhelming at times, especially when numerous diagnoses are thrown at you at once. I’m so proud of you and thrilled to have you as my co-moderator here in the forums!

  • dawn-debois

    Member
    January 26, 2020 at 8:37 am

    Ashley,

    Your resilience and strength in juggling all that you do is going to be of benefit for all LEMS and multiple autoimmune syndrome patients to witness here in the forums as well as in real life. It can all be so overwhelming at times, especially when numerous diagnoses are thrown at you at once. I’m so proud of you and thrilled to have you as my co-moderator here in the forums!

  • Ashley

    Member
    January 28, 2020 at 7:07 am

    Price, Thank you! Hope to hear your story one day also!

    Dawn, Thank you! It can definitely be overwhelming, but I also think it has given me more appreciation for life and the good days I have! I have also learned to try to slow down! I’m so thankful to have you as a cheerleader and one of my closest friends!

  • tescha

    Member
    January 28, 2020 at 10:15 am

    Ashley,  Thank you for sharing your story and I love the LEMons!  I’m so happy that you were able to get your diagnosis and treatment so quickly.   After seeing that after your treatments that you had great improvements!!  In the fact that you were almost returned to baseline, able to work and do the activities you love!  I too love to hike and tons of outdoor activities with the dogs too!  After reading this I have hope that I too may have the same improvements with treatment.  Thank you.  Tescha

  • Ashley

    Member
    January 29, 2020 at 7:23 am

    Tescha,

    I am SO glad I could give you some hope! 🙂

    I really hope you have the same improvements as I did! I do consider myself very lucky but am also very stubborn! I would love to hear your story one day! Feel free to ask me any questions you might have at any point!

  • dawn-debois

    Member
    January 30, 2020 at 8:11 am

    Ashley, LEMS has brought about some amazing friendships in my life. Yours is one of them, as is Price. Talk about blessings in disguise!

    Tescha, I’m so happy to read that you are finding hope in our forums!  Ashley is such a great example of having a rare disease but the rare disease doesn’t have her. We are both so happy you are here with us!

  • Ashley

    Member
    February 2, 2020 at 11:06 am

    Dawn, I feel the same way! I am very grateful for the connections I have made due to LEMS, especially our friendship! I just wish we lived closer!

    I feel my friendships in general have become stronger because of my LEMS diagnosis.

    Tescha, As Dawn said, we are truly happy to have you and love to offer you hope!

  • rdt

    Member
    February 2, 2020 at 4:13 pm

    Wow, I have a lot of your similarities on my LEMS diagnosis journey. I too initially (2016) developed severe infections & viruses that then went onto a severe POTS flare also with HR upwards of 200 bpm with Long QT syndrome! This then followed by excruciating neuropathy and muscle weakness with subsequent muscle cramping with painful fasiculations. Unfortunately it took me a year and traveling to 4 different states to finally get my LEMS diagnosis. Fortunately my 25 yr nursing experience kept pushing me to get that diagnosis when all the doctors had given up. Unfortunately I haven’t been able to work as a nurse since 2016. I’m currently on disability for my progressive LEMS. I’m still very much struggling and in the thick of the illness. Eventually I need to write a full introduction about my LEMS journey as you have done, but it’s just too daunting for now. Maybe I’ll have the stamina if I get a few more Plasmapharesis treatments soon. Thanks so much for sharing!! Does definitely give hope hearing you’re doing so well <3

  • Ashley

    Member
    February 2, 2020 at 4:54 pm

    Rebecca,

    Welcome! Wow, that’s incredibly interesting! I have seen a lot of people begin having issues post-viral/bacterial infection. I was told it was because my body went into overdrive fighting the infection, and then didn’t know how to “turn itself off” after. I always wondered if I always had the autoimmune issues and they were waiting for a switch to be flipped or if the illness made them begin. I find the immune system very interesting!

    I’m also happy to see a fellow nurse on here! At my infusion center, there are several of us nurses with POTS but none have LEMs. I’m sorry you are no longer able to work, I’m sure that is very hard. No rush on sharing your story, share when you feel ready! I have had lots of time to digest and cope and have been lucky enough to find a treatment that allows me to continue my life so I was ready to share! It’s funny we were diagnosed in the same year, Dawn was also diagnosed in 2016.

    I see you are doing plasmapheresis. Have you tried or considered trying IVIG?

    I’m glad that I can give you some hope also! 🙂

  • rdt

    Member
    February 2, 2020 at 6:02 pm

    Thanks Ashley for the welcome.

    When I was finally diagnosed I was so physically impaired, ivig was the first treatment option I was offered. So I did my initial 5 days of ivig (reacting from day 1 despite increasing the pre-meds each day). Within 36hrs after last dose I was in hospital as I developed aseptic meningitis from ivig. It took me almost a year to recover from the aseptic meningitis!! I still have daily headaches from it! Also compounding the delay in recovery was I also contracted Rocky Mountain Spotted Fever (RMSF)  from apparently one of the ivig donors. We called the ivig manufacturer and of course RMSF is not an illness they test for. So I also had to undergo IV antibiotics to treat for that on top of the aseptic meningitis. Dealing with these side effects on top of worsening LEMS symptoms was absolutely brutal. I will never touch ivig again!

    I Also did 3,4 DAP that also severely reacted to with cardiac side effects & possible seizure. So that was out. Tried several other oral meds & even steroids to no avail. Mestinon has helped stabilize my POTS, but does nothing for other LEMS issues. I’ve done 2 rounds of Plasmapharesis (5 days each) and that drastically helped my neuropathy, improved my voice and eliminated my fasciculations. But relief only last about 6 days. I guess that’s how long it takes my body to renew making my LEMS antibodies (I have both P/Q & N-type).

  • dawn-debois

    Member
    February 3, 2020 at 7:17 am

    Hello Rebecca,

    Welcome to the Forums. I just now had a chance to read your posts and all I can say is “Wow.”  I’m so sorry IVIG had so many complications for you. That and 3,4 DAP- It is known to possibly cause prolonged QT intervals. Yikes, you are definitely the rarest of rare!

    I’m glad you are getting some relief with plasmapheresis; but that turn around time is definitely short.  I heard from the mother of one LEMS patient that her doctor wanted her to do 10 days inpatient plasmapheresis as a start on cleaning out the antibodies. She was able to start IVIG instead and has made great gains. IVIG for me has been a game changer as well.  I realize every day there could be an added complication with it being from plasma donors; but I have to take that chance and thus far have done very well on it. I have a friend with CIDP who has been on IVIG for 19 years with no issues other than the headaches. She and I both transitioned to Sub-Q recently to try to alleviate the typical side effect profile.

    Our ultra rare disease is getting a lot of attention in the science world these days. Please keep the faith that there may be new options for treatment coming along soon for you.

  • tescha

    Member
    March 17, 2020 at 9:25 am

    Morning everyone, I am very grateful for LEMS news forum!  I wanted to take a few minutes to introduce myself and share my story to my diagnosis of Autoimmune LEMS.     Starting in 2010, I developed symptoms postural tachycardia, fatigue, weakness, tingling/numbness of lower extremities, shortness of breath with exertion, and exercise intolerance. I continue to have recurring symptoms for 10 years and with each flare lasting approximately 6 months then returned to baseline.  However in Feb 2016, I developed a respiratory failure which required admission and oxygen for 6-8 months.    I was evaluated by many specialist neurologist, cardiologist, pulmonologist, neuromuscular specialist all over the country and it was still unknown the cause of my symptoms or respiratory failure.   4 months prior,  I was rock climbing, running, hiking, biking, and playing sports to respiratory failure and on oxygen.    I had improvements over the next 2 years but never returned to baseline.   April 2019, I woke up suddenly with recurrent symptoms and while at work had near syncope with hypotension, tachycardia and hypoxia.   Finally December 2019, I received my primary diagnosis of Autoimmune LEMS and secondary diagnosis of worsening tachycardia.  Started on daily Prednisone and 2 weeks later IVIG infusion of gammagard.    After 2 weeks my hypoxia resolved.

    I have worked as a Physician Assistant in the Emergency Department for 14 years until April 2019 when I had to be placed on short time disability.  I returned to part time work Oct-Dec 2019 however my symptoms worsened and as a result lost my employment.     I hope to return to practicing medicine in the near future but for now my focus and goal is to improve, regain strength, and to one day return to my activities (running, biking, and hiking) that I love!

    Thank you

    Tescha

  • price-wooldridge

    Member
    March 17, 2020 at 10:59 am

    Welcome Tescha!  It’s good to hear your story and, I do understand what a difficult road it’s been.  It’s good to know you have a medical background and know when to seek help.  I practiced as a Registered Respiratory Therapist for some years and often hear LEMS patients in some degree of respiratory distress, but seem not to know what to do.  They know the LEMS association so they want to call their neurologist.  Obviously, in distress it’s get to an ER.  Then a pulmonologist is the next step to add perhaps a sleep study, machine support at home, and medications.  I hope, once you regain some equilibrium, you are able to get work back into your life.

  • Ashley

    Member
    March 18, 2020 at 10:36 am

    Tescha,

    Thank you for sharing your story! Sounds like we have a similar story and symptoms. I’m sad to hear that you waited so long for your diagnosis and hope that together we may be able to change that for other patients!

    What treatments are you currently on? Have they continued your IVIG?

     

  • tescha

    Member
    March 19, 2020 at 10:28 am

    Thank you so much for your comments!!!   I have been on Firdapse since Dec 29, 2019, then in feb added prednisone and  started IVIG.  I just finished my second IVIG this week.  I’m also on Propranolol and Northera.   I’m hopeful that this combination will be the answer I have been looking for.   Just wondering if anyone else with Autoimmune LEMS has experienced respiratory distress and hypoxia?

     

    Tescha

  • Ashley

    Member
    March 24, 2020 at 9:06 am

    Tescha,

    I hope it will be the combination you are looking for!

    I also take propranolol for my autonomic dysfunction, but I take corlanor instead of Northera so that’s an option for you as well!

    Personally, I have not experienced respiratory distress or hypoxia, but I have heard that symptoms can get really severe without treatment and can progress to that.

  • tescha

    Member
    March 24, 2020 at 12:44 pm

    Thanks Ashley!!!  I hope the combination improves my quality of life too!   Safe healthy and be safe everyone

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