Lori Dunham
Forum Replies Created
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Hi Ashley. I am so very sorry to hear of your miscarriage. Having been through multiple miscarriages, I understand some of what you are going through. Of course, I know LEMS adds another dimension to the complexity of your pregnancies. Thank you for your willingness to share your pregnancy journey with us as we all seek more information regarding pregnancy and LEMS. Congratulations on your marriage!!!
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Hi Tim. Our daughter was diagnosed with LEMS at age 15. She did have a flu shot a few weeks before she started exhibiting symptoms of LEMS. Her rheumatologist explained that the flu or flu shot could trigger an overactive immune response, leading to symptoms of LEMS. Of course we don’t know for sure, but I definitely saw the correlation in my daughter’s case.
There are multiple treatments available so I hope that you find one that works for you. So happy to hear pyridostygmine works so well for you. My daughter is on 70 mg firdapse, 180 mg pyridostygmine along with time release pyridostygmine at night, and rituxan infusions every six months. The rituxan has made a huge difference for her.
I’m glad you reached out. We have a great community that supports one another well.
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Love seeing This Price!!! Thank you for sharing.
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I’m glad you were able to be released later that night and everything was good. This is a good reminder for all of us to not let unusual symptoms go without seeking medical attention.
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Ashley, thanks for sharing your experience and tricks with all the differing sleep problems that come with LEMS. For us, it’s been kind of a trial and error process so I love hearing what helps other people.
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Loved getting to know you all and hear your stories.
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I will be there! Looking forward to it!
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Thank you Dawn for sharing this information. It looks like a worthwhile use of our time.
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Looking forward to the next Zoom meeting in October. Grace and I enjoyed “meeting” all of you that could join in on the call. We have never met any LEMS patients in person so this is the next best thing until that could happen. It really encouraged Grace to see other people like her. It was a blessing to me as well! We missed you Price and look forward to seeing you at the next one.
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Looking forward to it! See you all then.
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Wonderfully done!!!!
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I will plan to be there!!! Thank you. It’s a great idea.
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Our daughter Grace, age 16, was diagnosed two years ago. We live in Jacksonville Florida.
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I’d love to hear some of the things other people do to make life a bit easier!!
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I love historical fiction as well. I am trying to add some classics in as well but that is a little harder to do.
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This is a great step in the right direction. Grace does not take the time release mestinon yet but I’d like to ask about it at her next neurology appt. I hope it could help her a bit throughout the night and first thing in the am.
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I think that would be amazing! Grace has extreme weakness in the morning because her last dose of rizurgi is at 6pm the night before. A time release pill would be a game changer!!!
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Great questions Ashley! I would love to hear everyone’s answers. For Grace, it’s the days she is able to do “normal” teenage activities like going to the mall or doing something with friends. On these days, I see a lightness to her that is so beautiful to see as her mom. Like, for a little while, the burden has been lifted.
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Thanks Price. You always do such a good job!!! Rituxman has done wonders for Grace.
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Hi Ashley. We are passionate about raising awareness as well!!! We all have a voice and message that matters!!!! Thank you for this very important reminder.
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So Grace started out with ivig and had treatments every four weeks for about a year. But around the year mark, her neurologist thought we may have better results with rituximab because her walking and balance were still very compromised. She had her first rituximab and she definitely had increased results from the rituximab in relation to the ivig. She has more energy and does not have the highs and lows throughout the month like she did with ivig. Overall, it has been a very positive result for us so far. Price, I hope you are able to have peace about whatever decision you make going forward and find what works best for you in light of the new health concerns.
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I love it. The design is great. Great job!
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I’m so sorry to hear you are struggling with post ivig symptoms. Grace sometimes experiences a headache, sometimes nothing at all. I hope you feel better very soon.
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Hi Heather. My name is Lori Dunham and my daughter was diagnosed with LEMS at 15 (started showing symptoms at 14) so I have an idea of what you are going through. If you would like, we could touch base privately. I’m happy to talk or message. Where do you live?