• What Can I expect

    Posted by Debbie Hammer on December 29, 2022 at 3:50 pm

    Hello all. I was diagnosed with LEMS a few months ago. I am a nurse and scared to death. I don’t really know which forum to get on. I think I am freaked out and not thinking straight. I am going to put my questions down and Please tell me if I am not suppose to do this.

    1.What is the true Life Expectancy after diagnosis

    2.I had to cancel my PET SCAN and really I am afraid to reschedule. I have no symptoms of cancer that I know of.

    3. I also have COPD so Mestinon is the only drug I feel safe taking. The others can cause Resp Infection which I can’t afford to get.

    4. Will I be able to continue working I do a basically sit down job but there is some walking.

    5. How does LEMS progress.

    6. Where do I find an MD who knows about LEMS   I live in Washington State  about 30 mins North of Seattle

    7. I am scared to death.

    I would appreciate any help anyone can give me to understand this Disease better.

    Brian Herres replied 1 year, 6 months ago 9 Members · 15 Replies
  • 15 Replies
  • Price Wooldridge

    Member
    December 29, 2022 at 4:11 pm

    Hi Debbie, we’re glad you’re hear in the LEMS Forums with us. Both moderators, Ashley and me, have LEMS and have had it for some year.
    As they say, “knowledge is power”, so the more you know and understand about LEMS and how it presents inside you, the more able you will be to cope and overcome any anxiety. Consider this just the start of your LEMS knowledge journey, and the more you inquire, research, and learn, the quicker you will become more comfortable and make good decisions.
    I’ll briefly answer each of your questions, but please know that how you move forward and manage your LEMS, decisions and the course of action lies with you and your professional medical team.

    1.What is the true Life Expectancy after diagnosis
    LEMS itself does not lead to a reduced life expectancy. If the trigger for LEMS turns out to be an underlying cancer, that changes the outlook.
    Here’s a brief article on LEMS life expectancy: https://lamberteatonnews.com/health-insights/will-lems-affect-my-life-expectancy/

    2.I had to cancel my PET SCAN and really I am afraid to reschedule. I have no symptoms of cancer that I know of.
    A PET and CT scan are routine with a LEMS diagnosis, given that around half of LEMS is triggered by an underlying cancer, often Small Cell Lung Cancer. Ironically, LEMS patients who have this type of cancer, generally do better than the general population with it.
    Normal followup protocol after a LEMS Diagnosis is diagnostic imaging for a period of time, looking for any cancer that might be there. Discuss with your neurologist.

    3. I also have COPD so Mestinon is the only drug I feel safe taking. The others can cause Resp Infection which I can’t afford to get.
    I too have COPD. I take Mestinon and feel it is helpful to me. I also take Firdapse and IVIG Immunoglobulin infusions once a month. None of these treatments is immunosuppressive. There are other immunosuppressive drugs used in the treatment of LEMS which do cause immunosuppression by design. Again, where you go in your treatment plan depends on how effective what you do is, and what other options might be suggested.

    4. Will I be able to continue working I do a basically sit down job but there is some walking.
    Let your body tell you about your work. Many LEMS patients continue to work in demanding jobs and others go on disability, so it’s all over the map. Listen to your body, and it will tell you how your work life will proceed.

    5. How does LEMS progress.
    Here’s a brief overview of LEMS which includes LEMS progression: https://www.mda.org/disease/lambert-eaton-myasthenic-syndrome

    6. Where do I find an MD who knows about LEMS I live in Washington State about 30 mins North of Seattle
    Do you have a diagnosing neuromuscular neurologist? That person should lead your LEMS healthcare team. There is a physician finder for LEMS patients here: https://www.lemsaware.com/finding-a-specialist

    7. I am scared to death.

    Don’t be. You’ve already connected with us. If you are on social medial, I urge you to join this Facebook Group of LEMS patients: https://www.facebook.com/groups/24507873315

    I hope this helps allay your fears. Please continue to interact with us here in the Forums as you see topics of interest or have questions.

  • Ruth Nixon

    Member
    December 30, 2022 at 11:24 am

    Hi Debbie,

    I know this is a scary time for you. We have all been there. And it’s hard to get your head around it. However, getting the diagnosis is your first big step. At least you can move on with dealing with LEMS , and finding the right treatment for you personally.  I certainly found that initially I had to deal with one thing at a time, because thinking about everything at once was too overwhelming. I did find that however hard it was to get a diagnosis, it was better hearing that there was a reason for my symptoms, and I wasn’t losing my mind! Take it step by step , little by little, and let your brain take time to take it all in.  And mind yourself.

    • Debbie Hammer

      Member
      January 1, 2023 at 12:58 pm

      Thank you so much Ruth you described me to the tea.  I truly do not feel all alone because of you guys.

  • Desiree Taliancich

    Member
    December 30, 2022 at 3:19 pm

    You got this, Debbie! I’m also a nurse, and so is Ashley! Who better to manage this rare disease than us? You are going to be an incredible advocate for yourself. We’re all here to support eachother! Price’s response is super awesome! I was diagnosed a year and a few months ago but have had symptoms a few years prior, just didnt know what the heck was going on. Once we identify the diagnosis, we are ready to move forward. I still work, and yes, there have been some changes in my energy level but I’m continuing to work around them while i figure it all out. My Scans were all negative so my LEMS is not related to a neoplasm. So it’s part of me now, time to adapt. Please don’t hesitate to reach out any time and find the LEMS FB group. Be aware though, some people post things when they’re struggling, I mean not often to people think to post, “Having a great day today!” Everyone’s journey is different. This is not a death sentence! Push forward, full speed when you can because sometimes LEMS will slow you down. God Bless you! Keep your head up! We’re here if you need anything!

    • Debbie Hammer

      Member
      January 1, 2023 at 12:56 pm

      I needed all of your responses so bad. I already feel better. And to have nurses  respond  I Love it I have been in Healthcare 54 years and have no intentions of retiring. I feel so different today (even though my arms and legs are very weak) than I did before my post. You all have given me hope for 2023. I got up this morning and made Pancakes, eggs and bacon for my grandchildren. Haven’t done that for a while.  I will not give up Thank you again

  • Ginny Boynton

    Member
    December 30, 2022 at 5:02 pm

    Debbie,

    There are at least two other Facebook groups – all of which are helpful.

    https://www.facebook.com/groups/1534530249930144

    https://www.facebook.com/groups/1666194810327716

    Please feel free to reach out to join these groups as well. You may find LEMS patients who are near you geographically.

    Also, here’s a doctor at the University of Washington, Seattle, who you can reach out to. https://www.uwmedicine.org/bios/michael-weiss#about-tab

    Ginny Boynton

     

    • Price Wooldridge

      Member
      December 30, 2022 at 5:02 pm

      Thank you Ginny for providing these additional resources.

      • Debbie Hammer

        Member
        January 1, 2023 at 12:49 pm

        Oh my gosh you all are amazing. Thank you so much Ginny.

        • Ginny Boynton

          Member
          January 1, 2023 at 12:57 pm

          You’re welcome Debbie.

  • Bernie

    Member
    December 30, 2022 at 8:52 pm

    Hi Debbie. I, too live in Washington State. I am near Bremerton/Poulsbo. My health provider is Kaiser. They have an excellent diagnostician in Federal Way, he’s the one that diagnosed my case. I started symptoms in January 2021 and am now being treated with Mestinon, Firdapse and Rituxan infusions. I have no indications of Small Cell Lung Cancer (SCLC) but I am being monitored frequently to see if it appears. I would say that I am at about 25% of what I could do before LEMS. I do seem to be improving slowly so I have hopes of being able to travel and do more things.

    Don’t be too afraid. You can live your life with LEMS, it will just be different. Advocate for yourself, do your research and don’t let the MDs blow you off. Even though my neurologist was excellent in diagnosing my condition, I feel that I know nearly as much if not more than he does about this disease.

    Good luck. Since we are nearly local, feel free to reach out to me if you want to talk or meet.

    • Debbie Hammer

      Member
      January 1, 2023 at 12:48 pm

      Thank you so much Bernie. I am so glad you are in Washington. I love this group I put in 1 post and so many people have responded. I feel like I have a brand new family. Happy New Year to you

       

  • David1949

    Member
    January 3, 2023 at 4:18 pm

    Debbie,

    I have been living with LEMS since 2014 when I was 1st diagnosed. You have received great answers to your list of questions. I just wanted to add my encouragement and support to you. Price recently told me to trust my neurologist. I am and I will. I will keep you in my thoughts and prayers.

    David

  • Brian Herres

    Member
    January 4, 2023 at 2:22 am

    Hi Debbie

    I know exactly what your going through.

    I cant take Firdapse or IVIG and my outlook was really bleak.

    After some studying i decided to try Cannabis (i found some info that it might help with Myasthenia Gravis as well as MS and ALS).

    1. It got me into a positive state of mind and i decided to fight back.

    2. I can sleep ok now after so many sleepless worrying nights and a very bleak outlook on life.

    3. My COPD has almost completely disapeared (Deep inhalations from a bong can increase lung volume, Cannabis is a natural expectorant, and i do breathing exercises when im high which helps the lungs and the nervous system).

    4. Im back to work (was off sick for 8 months) as a Service Engineer and have absolved 3 trips to Spain, 3 trips to Hungary, 2 trips to Rumania, a trip to Austria ( all business trips) and a trip to the States for vacation with minimal problems this year. Im a US citizen living in Germany.

    5. PET scan is the best thing you can do to check your body for cancer! CT is good PET is better.

    I developed my own system as to how i use the medical cannabis to help heal my nervous system. Its been a wild ride but im doing pretty good considering the only thing im using to combat my LEMS is cannabis and my own mind.

    Cannabis is not a wonder drug that will help you to heal yourself overnight. It works in very small increments and has to used daily to work. I recommend Sativa for daytime (not as loopy and helps protect the nervous system and cells. Indica before naps or bedtime.

     

    If anybody needs help im here.

    Jennifer Jeanne Kim can also help as i helped her ( she is active in the FB groups).

    Your not alone!

    Best wishes Brian
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  • carol Oliver

    Member
    January 7, 2023 at 12:36 pm

    Hi Brian

    i have my medicine marijuana card. I’m curious, what is your system that you developed that helps you with lems.  I understand the sativa vs indica application but any other tips ?  Thanks

    carol

  • Brian Herres

    Member
    January 12, 2023 at 7:14 am

    Hi Carol

    I use a relatively high dosage right before bed. I use earplugs and a eye mask to isolate myself so i can concentrate (no music or tv). I always have a bottle of water next to the bed ;). I use a special pillow under my knees and i always start on my back for the 1st wave . When it ebbs i turn to my left side for the 2nd wave right side for the last wave then a potty break lol and then sleep. Autosuggestion helps me and i have a few different phrases that i use. There is a technique i learned from a healer that i use to strengthen my system at the beginning when i lay down. I use upward strokes with my fingers (both hands) from groin to breast and breath in going up then exhale repeat about 10 times (never down stroke as that relaxes your system).  I try to do breathing exercises in all 3 positions – very deep rythmic breathing slowly and full exhales but still in a relaxed way.  If you hear a tone or high frequency concentrate on it. The only way to explain what happens to me with the body high is that i get high charged muscle spasms all over in my body. Its like one of those electrical muscle workout thingys that make the muscles jump or twitch. The strain is also very important. Ive found some that work great some soso and some not at all even though it had a high THC %. I think the terpene profile is probably more important. Ive tried pretty much everything from pipes, joints, spliffs, vaporisers, bongs, full extract oil, brownies and so on and i think that a ice bong works the best and for non smokers a vaporiser. Coughing fits suck but can be of benefit expecially for smokers because of the natural expectorant in cannabis you should cough up phlem and have fairly clear lungs to sleep (ive been smoking for 41 years and have never slept so good). My COPD has also all but disappeared (my lung Doctor is anti cannabis and is upset because im doing so well LOL). Cannabis is also not a miracle medicine and has to be used everyday to work and it works slowly. It took me about 3 months to really get back on my feet although i did notice the small improvements daily. There is alot more that i could add (probably a books worth) but ill stop here. Yes i still have problems and flares but all in all im a very lucky man to be doing so good compared to the prognosis in the hospital. Good luck on your journey. Take care 🙂 Brian

     

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