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Will LEMS Affect my Life Expectancy?
Learning you have a rare disorder like Lambert-Eaton myasthenic syndrome (LEMS) can be frightening. Among the first questions many people have is: How will my lifespan be affected? Click here to find out more about it.
How did you react when you got your diagnosis? Was life expectancy something that came to mind right away?
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5 Replies
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I surprised my neurologist by being thrilled when he confirmed the diagnosis of LEMS! Sure I worried about the progression and how it would impact my life expectancy but I was relieved to FINALLY have an explanation and reason behind the symptoms I have been experiencing for the past 18 or so years! I now know my adversary’s name and can take better steps to fight it with the right weapons!
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Carmen, we are both from the same mindset. I was relieved to find out what had been plaguing me for most of my adult years as well. To finally have an answer, and know it wasn’t in my head, and a plan in place was a huge sense of relief.
For most people with autoimmune LEMS, it doesn’t seem to be progressive with all of the treatment options we have now. I feel fortunate for that. There are definitely some days that are not good; but when everything is as it should be med-wise, stress-wise, and treatment- with my IVIG, I do really well! Last summer my IVIG treatments were delayed due to the shortage and I went downhill fast. It was very scary and eye opening. I’m so grateful every day for that miraculous product! Without it, I would have a very different view of how LEMS was affecting me.
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Dawn, yes! That’s exactly how I felt! For years I would go between having all these symptoms to then feeling “normal” and not symptomatic at all. We have made several moves so I typically didn’t have the same team of doctors so I would have to start all over. I’ve had so much work up and so many times! Then the symptoms would go away and I would question if I was going crazy! It’s for that reason that I would put off going to the doctor for smaller flare-ups. I just didn’t want to deal with it all again.
I remembered you sharing about the IVIG shortage – and the nurses at the infusion center talked about it too. That is all in the back of my head! It is for that reason that I’m trying to find natural ways that I can help manage symptoms and that isn’t dependent on pharmaceuticals, human donors, insurance companies and basic supply/demand. I am grateful for this group that we can share experiences and bounce ideas off of! Thank you again for putting this together! 🙂
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Oh Carmen, I didn’t put this together. Bionews Services, the parent company of Lambert-Eaton News is doing a lot of work to make this a great site for LEMS patients. They also have pages for multiple other rare diseases. The team is amazing. I just feel fortunate that new patients can find info easier now than I could when I was diagnosed and am happy to be part of bringing it to the LEMS community.
Sharing info and experiences really helps others. I can’t imagine having moved a lot throughout my diagnositic process. However, once you get the right “team” in place it’s great! I a at a good place with all of my specialists right now and am very grateful for them!
Some patients have been able to get off of most meds based on supplements and diet/exercise. Kudos to you for giving that your all!
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Dawn, you should still give yourself a pat on the back for coordinating and being a part of it! But thank you Bionews Service and Lambert-Eaton News!!!
I’m so glad you shared that some patients have been able to get off of most meds and managing with supplements (I didn’t mention but yes, I’m doing supplements too) and diet/exercise. That’s VERY encouraging! 🙂
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