@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.
@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?
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!
I've had LEMS for over 6 years without developing cancer. My symptoms have progressed terribly. My neurologist in Huntsville only just officially diagnosed me but he said based on my old labs and tests my previous neurologists apparently didn't know what LEMS was. He told me he'd never seen a case like mine either though going on for so long without cancer. I'm not sure what to make of it. He's going to work on getting me approved for the new medication and I guess I'll go from there. Has anyone else experienced LEMS like mine? Right now I don't have private insurance so my options are limited.
I've had LEMS for over 6 years without developing cancer. My symptoms have progressed terribly. My neurologist in Huntsville only just officially diagnosed me but he said based on my old labs and tests my previous neurologists apparently didn't know what LEMS was. He told me he'd never seen a case like mine either though going on for so long without cancer. I'm not sure what to make of it. He's going to work on getting me approved for the new medication and I guess I'll go from there. Has anyone else experienced LEMS like mine? Right now I don't have private insurance so my options are limited.
Welcome @kelkelkel, I'm hoping @emonty, @mareeinga, and @dawg919 can share their experience with you. Did your doctor mention what new medication he was trying to get you approved for?
Hi. He said it was the firdapse. It sounds like an orphan drug. Has anyone had luck getting it approved on insurance? My regular pharmacy can't even order it. I guess it will be what it is.
Hi. He said it was the firdapse. It sounds like an orphan drug. Has anyone had luck getting it approved on insurance? My regular pharmacy can't even order it. I guess it will be what it is.
Hi @kelkelkel, I'm hoping someone that has ordered Firdapse can share their experience with you. The drug company does have a website with contact and other information the might help you find how to order it. The first link Access & Affordability mentions this - "Complete the Enrollment Form with your doctor or call 1-833-4-CATALYST (1-833-422-8259) for assistance."
I have just found out I may have LEMS. I had an M/G evaluation w/reflex lab test done at Mayo, with the following comment: "This antibody profile is consistent with Lambert-Eaton Myasthenic Syndrome. A paraneoplastic basis should be considered, small cell lung cancer is the most commonly associated cancer." Normal readings should be < 0.02 nmol/L and my reading was .62 nmol/L. I am mildly alarmed by this as I have been dealing with a possible MS diagnosis for many years, with never a thought of cancer. Does anyone have any input for me? I have been scheduled for an urgent EMG this week. Will the EMG results provide a definitive answer as to the LEMS?
Thanks!
I have just found out I may have LEMS. I had an M/G evaluation w/reflex lab test done at Mayo, with the following comment: "This antibody profile is consistent with Lambert-Eaton Myasthenic Syndrome. A paraneoplastic basis should be considered, small cell lung cancer is the most commonly associated cancer." Normal readings should be < 0.02 nmol/L and my reading was .62 nmol/L. I am mildly alarmed by this as I have been dealing with a possible MS diagnosis for many years, with never a thought of cancer. Does anyone have any input for me? I have been scheduled for an urgent EMG this week. Will the EMG results provide a definitive answer as to the LEMS?
Thanks!
@kjaffee, Normally my Mayo care team follows up and explains the results of any test I've had. There have been occasions where I've seen the test results on the patient portal before I talked with the doctor or PA about the results and been a little scared or confused. I think it might be worth a phone call or a quick message on the patient portal to request an explanation and answer to your question. Are you able to call your doctor and discuss the test?
@kjaffee, Normally my Mayo care team follows up and explains the results of any test I've had. There have been occasions where I've seen the test results on the patient portal before I talked with the doctor or PA about the results and been a little scared or confused. I think it might be worth a phone call or a quick message on the patient portal to request an explanation and answer to your question. Are you able to call your doctor and discuss the test?
Good morning John.
I have a great portal called MyChart. I emailed the MS specialist and she replied that the neuromuscular team will decide what happens next. I have my EMG scheduled for tomorrow at OHSU in Portland and should get the feedback I need then. I was wondering how definitive an EMG is for diagnosing LEMS. Thanks for your input!
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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.
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Like -
Helpful -
Hug
1 ReactionYes - 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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Like -
Helpful -
Hug
2 ReactionsI've had LEMS for over 6 years without developing cancer. My symptoms have progressed terribly. My neurologist in Huntsville only just officially diagnosed me but he said based on my old labs and tests my previous neurologists apparently didn't know what LEMS was. He told me he'd never seen a case like mine either though going on for so long without cancer. I'm not sure what to make of it. He's going to work on getting me approved for the new medication and I guess I'll go from there. Has anyone else experienced LEMS like mine? Right now I don't have private insurance so my options are limited.
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Like -
Helpful -
Hug
1 ReactionWelcome @kelkelkel, I'm hoping @emonty, @mareeinga, and @dawg919 can share their experience with you. Did your doctor mention what new medication he was trying to get you approved for?
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Like -
Helpful -
Hug
1 ReactionHi. He said it was the firdapse. It sounds like an orphan drug. Has anyone had luck getting it approved on insurance? My regular pharmacy can't even order it. I guess it will be what it is.
Hi @kelkelkel, I'm hoping someone that has ordered Firdapse can share their experience with you. The drug company does have a website with contact and other information the might help you find how to order it. The first link Access & Affordability mentions this - "Complete the Enrollment Form with your doctor or call 1-833-4-CATALYST (1-833-422-8259) for assistance."
-- Access & Affordability
Explore How To Access FIRDAPSE And Financial Support Options.
https://www.firdapse.com/starting-firdapse/access-affordability/
-- Answers to Frequently Asked Questions:
https://www.firdapse.com/resources/faqs/
Hope this helps.
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3 ReactionsThank you so much.
I feel like I've lost so much dignity due to this illness that I will do whatever I can to get the medication.
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2 ReactionsI have just found out I may have LEMS. I had an M/G evaluation w/reflex lab test done at Mayo, with the following comment: "This antibody profile is consistent with Lambert-Eaton Myasthenic Syndrome. A paraneoplastic basis should be considered, small cell lung cancer is the most commonly associated cancer." Normal readings should be < 0.02 nmol/L and my reading was .62 nmol/L. I am mildly alarmed by this as I have been dealing with a possible MS diagnosis for many years, with never a thought of cancer. Does anyone have any input for me? I have been scheduled for an urgent EMG this week. Will the EMG results provide a definitive answer as to the LEMS?
Thanks!
-
Like -
Helpful -
Hug
1 Reaction@kjaffee, Normally my Mayo care team follows up and explains the results of any test I've had. There have been occasions where I've seen the test results on the patient portal before I talked with the doctor or PA about the results and been a little scared or confused. I think it might be worth a phone call or a quick message on the patient portal to request an explanation and answer to your question. Are you able to call your doctor and discuss the test?
Good morning John.
I have a great portal called MyChart. I emailed the MS specialist and she replied that the neuromuscular team will decide what happens next. I have my EMG scheduled for tomorrow at OHSU in Portland and should get the feedback I need then. I was wondering how definitive an EMG is for diagnosing LEMS. Thanks for your input!
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Like -
Helpful -
Hug
1 Reaction