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Newly diagnosed and have a few questions
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>I live in a rural area and my local doctor ordered the antibody test which came back as me having<br style=”box-sizing: border-box;” />.05nmol/L P/Q type Calcium channel Antibody.<br style=”box-sizing: border-box;” />I did not have any of the other antibodies. He told me I have Lems and referred me to a specialist.</p>
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>My local doctor told me I have Lems and referred me to a specialist but they cannot get me in for 2 months. My local dr repeated the test to be sure not a false positive.</p>
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>So my question is— if I have this antibody is there a chance it could be nothing? Or it is definitely something? I wasn’t sure that the presence of the antibody alone and my other symptoms definitely made it Lems.</p>
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>The reason I had the test is onset of weakness, fatigue, and pretty severe double vision— which I still have and cannot see very good— I cannot drive at all.</p>
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>I just wanted to ask others what we’re the first steps you went through? And maybe I don’t have Lems? I am a non-smoker</p> -
6 Replies
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@jennyc,
I’m happy to answer your questions!
Usually having a P/Q antibody is diagnostic of LEMS, but you should definitely follow up with a specialist. Most doctors are ordering a second check of antibodies to be sure like yours did. Do you know if the results are back on that and what your level of antibodies was?
I’m sorry you are having to wait a few months to see a specialist. Sadly, that is very common in the rare disease world. I am not a doctor, so I can not diagnose you with LEMS, but it does sound like the symptoms you described in this post and in your “Introduction” post do sound typical for LEMS, although it could be many other things as well.
The first steps I would recommend is waiting to see the specialist. You could call and ask if they have a cancellation list and ask to be placed on it. Most doctors offices have this and it may allow you to be seen sooner. I would follow up about the results of your second antibody test if you haven’t already. Your regular doctor should be able to prescribe you Mestonin (Pyridostigmine) which helps with generalized muscle weakness and you may find some symptom relief with that. I would also ask about getting a PET scan to rule out any possibility of malignancy. Sometimes LEMS can be caused by small cell lung cancer, so we want to be sure you have a clear scan before proceeding with any treatment options. Once you get an official diagnosis, there are many treatments that will help LEMS. I would recommend taking either Firdapse or Ruzurgi, but you will need an official diagnosis most likely before your doctor prescribes this. This medication is approved for LEMS patients and has been a lifesaver for many patients.
I hope I answered your questions. I am happy to answer any further questions you have!
Look forward to hearing back from you.
Ashley
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My first and second antibody test came back the same with p/q type antibodies of .7 nm/L.
I have a CT scan scheduled. Dr I have been referred to is 3 hours away in Dallas. I will have EMG nerve conduction test that day too.
I don’t think they will let me come in on a cancellation since they have different things scheduled. And they did start me on mestinon. Not sure how to tell if that is working or how soon it should — I’ve been taking it a week.
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@jennyc,
I’m sorry you have to travel, but I’m glad they were able to go ahead and get that scheduled for you. What day do you have these scheduled? Most of us have also had the EMG done as well. Do you know if it is a regular EMG or a small fiber EMG? The small fiber EMG is more used for LEMS and is more reliable than the regular EMG when it comes to a LEMS diagnosis.
I see, it’s worth it to double check although they will probably want to have your test results back before they make a decision on your diagnosis. Usually, Mestonin works pretty quickly, most people notice a difference in a few hours but it doesn’t work for everyone.
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On my second dose the last 3 days in mestinon I’ve had trouble speaking- like forming certain words. I don’t see that as a side effect anywhere online so I don’t know if it is the meds. Has anyone heard of this?
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Jenny, I’ve been on Mestinon for a couple of years, and I’ve never heard anyone report this as a side effect. My LEMS does at times affect my vocal cords and my mouth muscles though. In my case, these issues can come and go with no relation to how I’m feeling overall.
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Jenny, if you are cutting and pasting into the forum, please note our software will insert formatting gibberish into you post. I’m just learning this is an issue. Please post everything within the forum software. Thanks.
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@jennyc,
Hi Jenny!
I haven’t heard of that side effect being caused by Mestonin. If you are experiencing that, I would recommend calling the prescribing doctor to let them know, they may want to see you in the office since you are having new symptoms.
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Thanks for the cutting and pasting tip! Saw that afterwards!
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