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Have I been tested good enough for Myasthenia gravis?

Messages
22
@Ethereal55

I can't use multi-quote because your entire reply is inside of one big quote box (in post #18 of this thread) so I just copied & pasted it so that I can reply to a few things here:

Sorry about that ;)


That is interesting and I did not know that dry mouth is common in LEMS and I've never had that symptom. In my case, the LEMS was determined to be autoimmune and not paraneoplastic (and I did the lung cat scans for 3-years in a row). I am assuming that you have also checked to rule out cancer (or that you are in the process of doing this)?

Well after initial presentation i requested a CT Scan myself to rule out small cell lung cancer at least at that time because no physician even knew what Lems was lol, they agreed to it because i also have an enlarged spleen so it was a full body CT scan at the time. Nothing was found though. Haven't checked since though, because a) the risk of it being that is so small and would have manifested itself by now probably (more than 2 years in) and b) i kind of gave up on that notion because with my genetics and auto-immune issues now i have elevated cancer risk no matter what so why add to that by ingesting CT radiation on top to chase something very unlikely in my case.



I also had a severe case of Mono/EBV in 2012 that re-activated in 2013 and then immediately led to me having severe POTS (but I was not tested for the autoantibodies until 2016).

Very interesting!!! Seems there are more and more people coming out with this connection in relation to many diseases. Now...have you had flux cytometries done in the past to truly check your immune system? Because i am rather certain that something is off with pretty much everyone's immune system that cannot keep EBV under control like most people can. In my case it turns out i have some kind of T & B Cell deficiency of undiagnosed origin for now. But looking at my numbers it's no wonder my immune system cannot keep EBV in check, leaving it to rage around freely and causing all kinds of AI diseases and worse in the process.
Wish they'd prescribe me Antivirals, but it makes too much sense i guess, plus most doctors won't even acknowledge the phenomenon of reactivations unless you have SEVERE CAEBV (which is mostly fatal) so the milder versions are not a "thing" yet in the West and will take a few more decades to become one, by which point i and many others won't care anymore sadly. What was your EA titer (if you still know that is) and more importantly, how is it now? Under control or still flaring/reactivated?


If I remember correctly, I was given a 60 mg tablet that I cut into 1/8ths so the dose that I tried was only 7.5 mg. I was not able to tolerate it (at that time) and it gave me respiratory depression. Back then, I also got respiratory depression from Magnesium and other things that were calcium channel blockers (but I did not yet know why). My doctor had me try the Mestinon in the hope that it would raise my blood pressure (which was very low) and help w/POTS. I don't remember if I took it w/food but in my case, I don't think that would have made any difference.

Yeah that IS a really tiny dosis. Nevermind then... and no, food only makes a difference in relation to GI symptoms sadly.


Can you still get tested for Sjogrens to rule it in or out? What was your ANA titer & pattern? It sounds like you either did not test for anti GAD65 or that you did and it was negative. I tested positive for GAD65 on the same Mayo Panel where I learned that I tested positive for the Calcium Channel Autoantibodies.

Ana was 1:360 Numa 1 Spindle (a rather rare pattern actually)

Not sure my immunologist even knows what GAD65 is lol, i need to bring it up next time.
Sjogrens ABs were negative a year ago anyway.
At this point i know i have general autoimmunity, so this may not fit into a nice diagnosis box right NOW at this point, but will probably at some point in the near future, or not, because the markers don't always show up. I have so many rare genetic factors going on though that i am just waiting for my exome to be finished, then see what's what (hint: it's not gonna be great lol).
 
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Gingergrrl

Senior Member
Messages
16,171
Sorry about that ;)

No worries! :) But if next time you can reply without putting my entire post and your answers inside of one big quote box, then I can quote your replies in my response (or others who want to reply).

You said:
Well after initial presentation i requested a CT Scan myself to rule out small cell lung cancer at least at that time because no physician even knew what Lems was lol, they agreed to it because i also have an enlarged spleen so it was a full body CT scan at the time. Nothing was found though.

That is good that you had the initial CT scan.

Haven't checked since though, because a) the risk of it being that is so small and would have manifested itself by now probably (more than 2 years in) and b) i kind of gave up on that notion because with my genetics and auto-immune issues now i have elevated cancer risk no matter what so why add to that by ingesting CT radiation on top to chase something very unlikely in my case.

I totally understand how you reached this decision and when I reviewed a lot of literature & research on LEMS & paraneoplastic syndromes/ cancer back in 2016, there was a great deal of variation in the number of years that doctors were recommending to do the cancer checks for Small Cell Lung Cancer (SCLC) if you had the LEMS autoantibody.

I read everything from 2 to 5 yrs of doing high resolution cat scans (which I agree w/you is a LOT of radiation, and I am also an elevated cancer risk b/c of cancer in my family history). My main doctor ultimately felt that three yrs was enough so that is what I did. At this point (in 2022), it is clear that I never had cancer or any paraneoplastic syndrome vs. autoimmune disease b/c SCLC is a fast, aggressive cancer and it is now six yrs later (from when it was first discovered that I have the LEMS autoantibody).

Very interesting!!! Seems there are more and more people coming out with this connection in relation to many diseases.

Absolutely and the Epstein Barr Virus (EBV) from a severe case of Mono in 2012 was one of the major triggers of my entire illness. All of my doctors (past and present) have agreed on that in my case although I had several other known triggers in addition to the EBV which made it more complicated.

Now...have you had flux cytometries done in the past to truly check your immune system?

What are "flux cytometries"? I am guessing that I have not done this test unless it has another name in the US?

Because i am rather certain that something is off with pretty much everyone's immune system that cannot keep EBV under control like most people can. In my case it turns out i have some kind of T & B Cell deficiency of undiagnosed origin for now. But looking at my numbers it's no wonder my immune system cannot keep EBV in check, leaving it to rage around freely and causing all kinds of AI diseases and worse in the process.

I have done detailed testing of my immune system but am not sure if that is what you meant above? I have never had any immune deficiency on any test (except for the 2+ years that I was getting Rituximab infusions and then I had no B cells but that was intentional from the Ritux as a treatment for autoimmunity at that time).

Wish they'd prescribe me Antivirals, but it makes too much sense i guess, plus most doctors won't even acknowledge the phenomenon of reactivations unless you have SEVERE CAEBV (which is mostly fatal) so the milder versions are not a "thing" yet in the West and will take a few more decades to become one, by which point i and many others won't care anymore sadly. What was your EA titer (if you still know that is) and more importantly, how is it now? Under control or still flaring/reactivated?

I tried Famvir for about 8-months in 2014 and then briefly tried Valcyte in 2014 to early 2015. Famvir did not help me and I was not able to tolerate Valcyte at any dose. In my case, anti-virals did not help me (but I know that they are helpful for many people). By 2015, I had severe MCAS and the focus was shifted to getting my allergic reactions & anaphylaxis under control and then in 2016, it was discovered that I had the LEMS auto-antibody (plus many other autoantibodies for POTS, GAD65, etc) and it became clear to my doctors that my illness was autoimmune and my treatment shifted to high dose IVIG and later to Rituximab. My viral titers were all normal at that point that I started IVIG & Ritux but the autoantibodies & mast cell markers were very elevated.

Ana was 1:360 Numa 1 Spindle (a rather rare pattern actually)

That is interesting and I have not heard of that pattern. Mine was always 1:160, speckled pattern.

Not sure my immunologist even knows what GAD65 is lol, i need to bring it up next time.

It may not pertain to your case at all and I was just asking out of curiosity. In my case, I was completely negative for the main illnesses that are linked to GAD65 and it was assumed that I was positive for it b/c of my overall dysautonomia & Hashimoto's Disease.

Sjogrens ABs were negative a year ago anyway.

That is good that you checked for Sjogrens.

At this point i know i have general autoimmunity, so this may not fit into a nice diagnosis box right NOW at this point, but will probably at some point in the near future, or not, because the markers don't always show up. I have so many rare genetic factors going on though that i am just waiting for my exome to be finished, then see what's what (hint: it's not gonna be great lol).

Mine was not clear either b/c I had so many different autoantibodies. My doctor stopped testing b/c he said that even if we found evidence of more autoantibodies, it would not have changed my treatment plan. I never did any genetic testing (beyond 23andMe - and then I never really understood how to interpret the 23andMe beyond the most basic info).
 
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Messages
22
[B said:
"Gingergrrl, post: 2386848, member: 15021"]No worries! :) But if next time you can reply without putting my entire post and your answers inside of one big quote box, then I can quote your replies in my response (or others who want to reply).[/B]

Not really sure why it does that, i simply hit reply and then answer below hmm...


That is good that you had the initial CT scan.



I totally understand how you reached this decision and when I reviewed a lot of literature & research on LEMS & paraneoplastic syndromes/ cancer back in 2016, there was a great deal of variation in the number of years that doctors were recommending to do the cancer checks for Small Cell Lung Cancer (SCLC) if you had the LEMS autoantibody.

I read everything from 2 to 5 yrs of doing high resolution cat scans (which I agree w/you is a LOT of radiation, and I am also an elevated cancer risk b/c of cancer in my family history). My main doctor ultimately felt that three yrs was enough so that is what I did. At this point (in 2022), it is clear that I never had cancer or any paraneoplastic syndrome vs. autoimmune disease b/c SCLC is a fast, aggressive cancer and it is now six yrs later (from when it was first discovered that I have the LEMS autoantibody).

Agreed. I also followed my logic in thinking that even if i DIDN'T have SCLC then, by the time i was gonna be done with all those CT scans, the radiation would have probably upped my risk by so much, and if it WAS gonna be that, then i would probably have called it a day anyway.


Absolutely and the Epstein Barr Virus (EBV) from a severe case of Mono in 2012 was one of the major triggers of my entire illness. All of my doctors (past and present) have agreed on that in my case although I had several other known triggers in addition to the EBV which made it more complicated.


If they AGREED on that, why aren't you being treated for it right now? Or are you maybe? I hope they know that EBV just KEEPS on doing damage and triggering new stuff constantly in addition to what you already have. So it might be very reasonable to keep taking antivirals long term to keep it under control. Have you brought that up with them?



What are "flux cytometries"? I am guessing that I have not done this test unless it has another name in the US?

Flux cytometry or flow cytometry, same thing really. It is a technique mainly used to decrypt lymphocytes into their specific components so you can get a better picture of how your immune sytem functions (T cells, B cells, NK cells...)



I have done detailed testing of my immune system but am not sure if that is what you meant above? I have never had any immune deficiency on any test (except for the 2+ years that I was getting Rituximab infusions and then I had no B cells but that was intentional from the Ritux as a treatment for autoimmunity at that time).

So maybe you had a temporary "downtime" back then which permitted EBV to roam freely for a while and cause your AI disease then go back dormant? Unlikely though because most AI diseases are sapping strength from the immune sytem on their own, leading to even further AI diseases or other issues.
All i am saying is EBV is under control in immunocompetent individuals, but since immunocompetence is a spectrum, it is interesting to speculate whether a temporary immunodepression for whatever reason is enough to bring EBV back to the surface.



I tried Famvir for about 8-months in 2014 and then briefly tried Valcyte in 2014 to early 2015. Famvir did not help me and I was not able to tolerate Valcyte at any dose. In my case, anti-virals did not help me (but I know that they are helpful for many people). By 2015, I had severe MCAS and the focus was shifted to getting my allergic reactions & anaphylaxis under control and then in 2016, it was discovered that I had the LEMS auto-antibody (plus many other autoantibodies for POTS, GAD65, etc) and it became clear to my doctors that my illness was autoimmune and my treatment shifted to high dose IVIG and later to Rituximab. My viral titers were all normal at that point that I started IVIG & Ritux but the autoantibodies & mast cell markers were very elevated.

So if you couldn't take the antivirals for a longer time, what made your EBV titers go down? Or are they still up and that is what you mean by "autoantibodies"? If your VCA EA titer is down for EBV and so is IgM, then that usually means that you are not currently reactivated. If they are up however, it's another story.


That is interesting and I have not heard of that pattern. Mine was always 1:160, speckled pattern.



It may not pertain to your case at all and I was just asking out of curiosity. In my case, I was completely negative for the main illnesses that are linked to GAD65 and it was assumed that I was positive for it b/c of my overall dysautonomia & Hashimoto's Disease.



That is good that you checked for Sjogrens.



Mine was not clear either b/c I had so many different autoantibodies. My doctor stopped testing b/c he said that even if we found evidence of more autoantibodies, it would not have changed my treatment plan. I never did any genetic testing (beyond 23andMe - and then I never really understood how to interpret the 23andMe beyond the most basic info).
 

Gingergrrl

Senior Member
Messages
16,171
@Ethereal55 You would highlight the portion of my post that you want to reply to (whether it is one sentence or a paragraph) and then either hit "reply" or "quote" for multi-quote. You would do this for each part of my reply that you want to respond to and it will put it into a new box below and then you would type your answers in that new box.

I am tagging one of the moderators @Rebeccare and am hoping she can help you (and I am certain that she can explain it better than I just did)! It is too hard for me to keep replying when everything is inside of one big quote box b/c then I cannot reply without cutting & pasting each individual part. I apologize about this and would like to reply further in the future (and apologies for bothering you w/this Rebecca)!
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
@Ethereal55 , we have a lot of different reply options here, which can make things confusing!

It looks like you've been starting replies by hitting the 'reply' button on the bottom of a post.

1643830188150.png


What that does is start a new post which automatically puts the content of the post you're replying to into a quote box. That's fine if you want to quote an entire post, but that doesn't work so well with longer posts.



An alternative to doing that would be to scroll all the way down to the bottom of the page, and you'll see that there is a blank text box just waiting for you to write your reply in it!
1643830333031.png




If you want to quote just a small part of someone else's post, here is a great video tutorial to show you different ways of going about it (the part about quoting starts around 1:30)


I hope this helps!
 

Gingergrrl

Senior Member
Messages
16,171
Thanks! I must have missed the pop up reply button somehow...

If you still wanted to ask me anything (from the earlier post) using the pop-up reply button, I will be happy to answer and help in any way that I can.

Not yet But I Asked for both single fiber emg and nerve stimulation test in my long conplaint I just sent after they concluded with me not having SFN when I clearly do.

That is good news and I hope that you will be approved to get the single fiber EMG and the nerve conduction test in the future.
 

Gingergrrl

Senior Member
Messages
16,171
Not yet But I Asked for both single fiber emg and nerve stimulation test in my long conplaint I just sent after they concluded with me not having SFN when I clearly do.
Thank you! Fingers crossed🤞

@ChookityPop Were you ever able to get the Single Fiber EMG & nerve conduction test? I know this is an older thread from Feb 2022 but I was curious what ever ended up happening?