Ashley
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Hey guys! Just wanted to post a recap!
Was glad that @Deborah Carpenter @Rene @Alan Stone were able to make it!
This month we chatted about navigating multiple hospital systems between doctors on our care team, changes in our diets, and the GI map food sensitivity test! Looking forward to next month!
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Hey guys!! You can come on in now!
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Hey @Geost
I’m sorry you are experiencing those symptoms! When I was taking firdapse and/or mestinon I found that I had a lot of GI issues. Occasionally, IVIG can upset my stomach as well but it doesn’t always.
It sounds like you were experiencing the GI symptoms before you started taking any medication? Have you gone to see a GI doctor?
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The scans are really interesting, but I think few chiropractors do them because it’s pretty high tech stuff!
Here’s more info if you want to look into it!
Understanding INSiGHT Scans: A Parent’s Guide to Your Child’s Nervous System Health – Safe Haven
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Hey @Dorothy Dempsey
I’m so glad they have helped you also! Does your chiropractor use the insight scans as well?
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I’ve tried it a couple of times and did like it although I can never fully turn my mind off like it needs to be. 😅
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Thanks for sharing these resources with us!! 🙂
I used to practice yoga regularly and I also found it helped me!
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Here’s the schedule for the meetings and you can also find the link to join the meetings here 🙂
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Hi @Dean !
Thanks for sharing your story with us!
Wow, I’m so sorry you went through that with your first doctor during your diagnosis! I’m glad you pushed on to see the second doctor and get on disability! It sounds like you had a rather long journey to your diagnosis like many of us here, I wish this wasn’t the norm! I’m proud of you for continuing on and eventually getting your diagnosis.
I agree with you about LEMS and trauma/stress! I still haven’t managed to find a way to completely lower my stress.
Having LEMS is like having a second job except you become the CEO, manager, and staff all in one! I think we all have ridden or are riding the roller coaster with you. Sometimes we have good days, and sometimes we have really bad ones… the important thing to remember is that you aren’t alone! We have this wonderful LEMS community and although we all are miles apart, we are here for each other!
We have monthly zoom meetings and would love to have you join us! Our next one is this Friday, the 27th at 5 pm EST!
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Hey @Fritz
Thanks for sharing with us! You have quite a story and it was really brave to share here! You really are a resilient trooper! I’m so sorry you went through all of that!
I personally believe trauma is a huge link to our LEMS diagnosis, or any autoimmune condition. I hate that your doctors made you believe “it was all in your head” for a year, I went through something similar during the early days of my illness before I was diagnosed, and I’ve heard that a lot of others have as well unfortunately.
I’m proud of you for continuing on and advocating for yourself! How is your LEMS these days?
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Hey Fritz! Thanks for sharing your experience with us! It also makes me feel sluggish!
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Hi Deborah! I’ve also found that alcohol can trigger my LEMS as well. I can usually get by having a glass or half glass of wine, but I find if I have more than one, then I am rather sluggish and weak the following day!
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Hey @Dorothy Dempsey ! I also find that I am more productive in the middle of the day! By 3, I am usually pretty fatigued. I also found that once I sit down, I relax and crash, so I have to keep moving in the day if I need to stay active.
I can totally see why beer could help relieve some of your pain! I’m glad you found a routine and something that works for you!!
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Thank you!! 😀
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Good choice!
I love plain sugar cookies also!! If they’d rather have cake, then there’s more cookies for you!! 😂
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Thanks for sharing @Kevin!
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Thank you Roberta!!
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Thank you so much David!
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Hey @Jamie L Sanderson
Thank you so much!! We are so excited!!
Bummer, we will miss you but have an AMAZING time!! Lazy rivers are my favorite! Just remember sunscreen, try to bring a battery powered handheld fan you can carry with you, and most importantly stay hydrated! It sounds like the perfect getaway!! Enjoy every minute of it, you deserve it! 🙂
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@Deborah Carpenter
Thank you so much!!
Have an AMAZING time with family!! We will miss you but hope to see you in August!
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Thank you so much @Lori Dunham !
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Hey @Deborah Carpenter ! Sorry we missed you last friday! All dates on this topic are current! Next month we will be meeting on July 12th at 5:30 PM EST!!
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Awesome!! Looking forward to seeing you next friday! 🙂