Any other LEMS sufferers out there?
Interested in more discussions like this? Go to the Autoimmune Diseases group.
Hi, my aunt has been very ill for the past 6 or 7 weeks & we finally got a diagnosis 2 days ago. We’re in Las Vegas. Did you go to Rochester, MN?
Yes, I'm new to this blog. I noticed that this post is from 4 years ago, and there do not seem to be any recent ones. I was diagnosed with LEMS here at Mayo in 2004, and had wondered if there was any one else out there with this disease, as it is so rare. For the present I'm very interested how you all are dealing with the Firdapse mess. Who can afford the price this pharmaceutical has put on this medication? I've become very active in trying to get the government to fix the loophole in the Orphan Drug Act that allowed this to happen. Is anyone interested in joining me?
My wife has been diagnosed with LEMS here in Georgia but has no successful treatment as yet. Currently, she's sleeping around 18 hrs per day and eating very little. She has no energy whatsoever. She gets out of breath taking a shower. We have an appt. with Dr. Sorrenson in Rochester in April and are very optimistic that he and his team can get my wife some help.
My wife has been diagnosed with LEMS here in Georgia …but I'm not convinced yet! She hasn't had a single test that has indicated anything in particular. All tests that she's had have been normal.
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Hello Jeff @dawg919, Welcome to Mayo Clinic Connect. I know it must be difficult for your wife and yourself when she is sleeping so much, eating very little and not knowing what is going on or what type of treatment will help. I think it's good that you have an upcoming appointment at Mayo Clinic Rochester and hopefully they will be able to confirm the diagnosis of Lambert-Eaton Myasthenic Syndrome (LEMS) and find a treatment to help your wife.
There is another discussion that you might find helpful for your upcoming appointment at Mayo Clinic in Rochester.
– Evaluation Appts: https://connect.mayoclinic.org/discussion/evaluation-appts/
Are you driving or flying to Rochester from Georgia?
I live in Georgia and was diagnosed at Mayo Rochester. LEMs is a very hard to diagnose!! The good thing is we now have FDA approved medicine. Does your wife have a doctor in Georgia she likes? If not, I know a great one. After leaving Mayo, I now follow up with Gavin Brown at Laurete Medical Group. If I can be of any assistance, Dr. Gavin Brown has been helping me for almost 10 years. If you would like information about getting around Mayo happy to help.
Hi @mareeinga – Welcome to Mayo Clinic Connect. Thank you for replying to Jeff @dawg919 to share your experience with LEMs. I added his Connect member name so that he will receive an email notification in case he is not following this discussion.
Do you mind sharing what you were searching for when you found Connect?
I was researching the history of Dr. Lambert and Dr. Easton discovering LEMs at Mayo Rochester. @johnbishop
Is there a specialist in the Ft Myers (Southwest Fl) area?
@emonty, welcome. You'll notice I moved your question asking about a doctor specializing in Lambert-Eaton Myasthenic Syndrome (LEMS) to this existing discussion. I did this so that you connect with others like @mareeinga
I'm not familiar with a specialist in Ft Myers. But you may wish to inquire at Mayo Clinic in Jacksonville. Here's the contact information for all Mayo Clinic locations: http://mayocl.in/1mtmR63
Emonty, has your diagnosis of LEMS been confirmed? Are you in treatment?
Thank you for asking. It is my husband who was diagnosed a couple weeks ago. . We have a neurologist but was wondering if anyone on this forum might know of a specific specialist. We are currently in treatment which consists if iciv, prednisone and azathioprine. Praying that this handles future symptoms.
Yes – Wes was officially diagnosed and began treatment mid Feb. he received 5 days of 5 hour Ivig’s, started imuran and prednisone. He will continue the drugs and is receiving ivig treatments one day a month. He is responding favorably thus far. We are keeping the faith for the future!
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