I did not know this. This is fascinating to me! It is my understanding that VGCC auto-antibodies are actually blocking the Calcium Channel. So in theory it seems any form of Calcium Channel blocker, Mg or Rx, would make LEMS condition even worse by blocking more Calcium Channels.
What did you mean in your quote by"Rx"? Did that mean "other prescription meds" (because "Rx" is often an abbreviation for prescriptions in the US) or did you mean Rituximab? Are you considering Rituximab to be a Calcium Channel blocker and if so, why? If it is, it brought my illness to remission (vs. magnesium, even in the form of an Epsom Salt foot bath, has given me respiratory depression). Another med which was incredibly helpful for my MCAS and never had any side effects for me (but some consider it to have components of a CCB but others do not) is Ketotefin. Weird.
Also, of the three Neuros that I saw in 2016, two of them told me not to take Mg (b/c it is a calcium channel blocker) but one of them told me that Mg was absolutely 100% fine for me to take. So there definitely is NOT any consensus on this. I belong to two groups on FB (one for people with the N-type VCGG autoantibody but who have a huge variety of diagnoses and one for people with LEMS) and even in there, there are many people who have no problem whatsoever with Mg... for whatever it's worth
Thx for your PM and I have not read it yet. I got very behind on PM's this week b/c my dad just had surgery and am trying to keep up with the main board but am missing a lot. I will definitely reply though... I am just slow
Maybe I don't have LEMS! I started supplementing with Mg Glycinate for the last 1.5 weeks and the initial response seems extremely positive. It's incredibly calming and it has helped calm my heart a bit plus I feel like I have more energy. If I truly had LEMS, would Mg cause more muscle weakness? I will continue the Mg trial very carefully and cautiously.
From my past experience talking to both Neuros and LEMS patients, there is no consensus on this and many are absolutely fine with Mg. If you told me, however, that you were taking a pure CCB like Diltiazem on a daily basis with no side effects, then I would question if you had LEMS. But I continue to question everything (about my own case) and I don't know if any of these issues can ever be truly solved? The way my illness started in 2013 was drastically different than what it was in 2015 to what it was in 2018 and now.
You also test positive on the Potassium Channel autoantibody (which I never have) and I don't know how this factors into your case?
I started Mg Glycinate for several reasons:
I think those are all valid reasons and I actually would take more Mg myself if I could tolerate it better. I think it's a great thing to take for the vast majority of people on earth (just not me at present
). I also have the auto-antibody "anti GAD65" which blocks the enzyme which allows glutamine to convert into GABA. Do you test positive for that one?
Hmmm... I don't know what to think now. This is so very confusing. @Gingergrrl I am so glad you pointed this out. This really has me thinking...
I agree this is all very confusing and one of the most frustrating things for me is that I am unable to figure it all out no matter how hard I try. I think from talking to you (and from the articles that you found so quickly below!) that you have a much stronger science background which I lack. I know there is a skill to finding good articles on any topic on-line but I have never succeeded in this
I need to do a colonoscopy soon b/c my mom passed away from colon cancer last year and am mentioning this b/c many of the prep drinks are Mg based which is not safe for me (among many other issues such as being allergic to food dyes also found in most prep drinks). I have a consult on 5/13 and am praying that I can speak to the GI doc and anesthesiologist in detail about my unique situation.
Respiratory failure in lambert-eaton myasthenic syndrome precipitated by calcium-channel blockers: report of a case and literature review.
This is an interesting article/abstract and it sounds like the woman was given a high dose of both Diltiazem and Verapamil at the same time... which I think might have killed me!
Exacerbation of Lambert-Eaton myasthenic syndrome caused by an L-type Ca2+ channel antagonist.
This article/abstract was also very interesting and I have two questions that I am hoping you might know (or have an opinion on).
1) Is there a commercial lab test (such as Mayo) for the L-type CA+ Channel Autoantibodies? It seems that there is not a commercial lab that tests for this (outside of research) so I don't know how any average patient would ever know if they are positive for the L-type Ab?
Which actually brings me to my next question which is...
2) Do you know if the anesthesia, Propofol, is considered a CCB? I have read on-line that it blocks the L-type CA+ Channel but am not sure if this means that I should avoid in (in a colonoscopy for example) or if it is safe for me?
I was heading down the path toward respiratory failure in 2015 & 2016 until the IVIG & Rituximab put this issue into 100% remission. So I will not undo it by having Propofol (and am certain that I can have other meds for the colonoscopy) but I'd LOVE to know in general if this is one that I should avoid? In the FB groups I mentioned, there were people who do absolutely fine w/Propofol (which was great to hear) but again, each person is unique so I don't know if it would pertain to me (and many of them did not have profound muscle weakness in their lungs & diaphragm like me). Ugh... this is all so frustrating
Also one of the articles that you linked (I think the second one) described LEMS as only having the P/Q type autoantibody (with no mention of the N-type) which is one of the reasons that my case seems to be atypical.