Lambert-Eaton Myasthenic Syndrome (LEMS) Confirmed!

crypt0cu1t

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Were you tested for P/Q and N type voltage-gated calcium channel antibodies too then? LEMS can have a particularly nasty bite in involving a paraneoplastic syndrome in some patients and these antibodies are often found in relation to having small cell lung cancer too so a chest x-ray and possibly a PET scan should be on the cards also if you have been sick with this for less than 5 years.
I got sick in 2011 but had a spontaneous remission for 6 years. Now its back worse than before
 

pibee

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great news, congrats

neurologist wrote down LEMS for me as suspected diagnosis, i have Sjogren's too, but LEMS is so unlikely in my case, as I never had (such) motor issues..
We'll see soon too

@crypt0cu1t which achR binding antibodies are you positive to?

my ESR and CRP were normal, each time they've checked
Are some of your neurological exams abnormal too?
 

crypt0cu1t

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great news, congrats

neurologist wrote down LEMS for me as suspected diagnosis, i have Sjogren's too, but LEMS is so unlikely in my case, as I never had (such) motor issues..
We'll see soon too

@crypt0cu1t which achR binding antibodies are you positive to?

my ESR and CRP were normal, each time they've checked
Are some of your neurological exams abnormal too?
I have AChR Binding Antibodies. My original diagnosis was MG, but I just dont seem to fit into the diagnosis of it. Doctors have told me that AChR binding antibodies can be positive in LEMS in rare instances.

The CRP and ESR definitely confuse me as LEMS isnt inflammatory, so it must mean that I havr another autoimmune issue as well (sjogrens?)

I have tons of neuro issues though none have been noted.
 
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kangaSue

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@crypt0cu1t I hope this works out for you.

What are the tests one gets to rule out LEMS, I read the wikipedia but wasn't quite clear.
If it were me, I would be wanting to have the equivalent of the Mayo PAVAL panel or DYS1 panel run even though their panel more specific for LEMS is the MGL1 panel.
https://www.mayomedicallaboratories.com/test-catalog/Overview/37427
https://www.mayomedicallaboratories.com/test-catalog/Overview/37428
https://www.mayomedicallaboratories.com/test-catalog/2011/Overview/83380

I would also get an ENA panel run too because of the chances of having more than another autoimmune condition .
 

Ben H

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Hey guys as you all know, I have tested positive for AChR Binding Antibodies, Salivary Protein 1 antibodoes, elevated ESR, elevated CRP.

Dr. Chheda suggested to me that my symptoms seem to almost line up with a disorder called LEMS, so she suggested I see a rheumatologist and neurologist to confirm the diagnosis.

After seeing both doctors they confirmed the LEMS diagnosis and said it is very likely that I have an early form of sjogrens as well.

This is great news for me as it means that I have a strong case to pursue possible treatments like IVIG, PP and RTX.

I'm still not out of the woods yet. I still have to wait for an upright MRI to check for chiari/CCI and see if my cyst needs to be removed, but I just wanted to update everyone!

Also want to thank @SK2018 for going over PP and RTX in a phone call to clarify some things for me!

@Learner1 @Gingergrrl Is it possible that I never had ME/CFS and it was just autoimmune the whole time?
Buddy, I am so pleased it seems you have got to the bottom of some things and you have got a treatable diagnosis.


B
 

crypt0cu1t

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Buddy, I am so pleased it seems you have got to the bottom of some things and you have got a treatable diagnosis.


B
I can't thank you enough for encouraging me to keep fighting Ben! You're an awesome dude.

Although LEMS and Sjogrens doesnt explain my neuro issues, Im pretty sure that I have autoimmune encephalitis or some sort of autoimmune CNS inflammation, so IVIG should definitely help!
 

Frenchguy

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I can't thank you enough for encouraging me to keep fighting Ben! You're an awesome dude.

Although LEMS and Sjogrens doesnt explain my neuro issues, Im pretty sure that I have autoimmune encephalitis or some sort of autoimmune CNS inflammation, so IVIG should definitely help!
Sjogren disease can cause severe fatigue, which can be similar to ME/CFS.

A small percentage of people with sjogren have "neuro-sjogren" which cause neuro issues (motor, cognition, autonomic etc).
 

Gingergrrl

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@crypt0cu1t I have been wanting to reply to this thread for several days but had family staying w/me for two days, and then other family from out of town, and a dinner, etc. I saw that I got tagged and several PM's and really wanted to reply and am so sorry for the delay!

After seeing both doctors they confirmed the LEMS diagnosis and said it is very likely that I have an early form of sjogrens as well. This is great news for me as it means that I have a strong case to pursue possible treatments like IVIG, PP and RTX.
I do not know anything re: Sjogrens but I was curious how they ultimately confirmed your LEMS diagnosis? I was given a LEMS diagnosis based on having the N-type Calcium Channel autoantibody and the clinical symptoms of extreme muscle weakness which included my lungs and diaphragm. At one point, one of my doctors was afraid I was going to end up on a ventilator if the breathing weakness did not plateau.

My case was confusing though b/c I also have POTS, MCAS, Hashimoto's Disease, and other autoantibodies (beta-adrenergic, anti-muscarinic/cholinergic, anti GAD65, etc). But the LEMS (calcium) autoantibody combined with the severe muscle and breathing weakness was what confirmed it even though I was negative on EMG. The problem though was that the EMG was conducted VERY poorly, was stopped mid-way by the Neuro, and was not a "single fiber EMG" which is the gold standard for LEMS. But in spite of how poorly it was done, it showed only 57% functioning of my left phrenic nerve (to the diaphragm) which was labeled as "mononeuropathy of the left phrenic nerve" (which I guess can be part of LEMS but am still unclear on this)?

My next IVIG is later this week and 6th Rituximab infusion in early Aug. At present I have no muscle weakness and can even lift heavy boxes! Prior to these two treatments, I could not even turn on the faucets in my shower, open a water bottle, or open my front door. Any attempts to stand for more than 30-60 seconds or use my muscles left me completely breathless and this is now 100% gone. My POTS and MCAS are also in remission (although I continue to take meds for both and would not DARE touch them at this point).

I feel very confident that you will be a responder to IVIG but please do not give up if you are not "cured" in one treatment as it is a long-term commitment. I have been doing IVIG for (almost) two years and Ritux for (almost) one year. There is no cure for LEMS, MG, POTS, MCAS, Sjogrens, Hashimoto's, ME/CFS, or any of these illnesses to the best of my knowledge. The best we can hope for is remission.

@Gingergrrl Is it possible that I never had ME/CFS and it was just autoimmune the whole time?
I do not know and never diagnose anyone else (and it has been challenging enough to try to clarify my own diagnoses)! But my guess is that you never had ME/CFS vs. autoimmune disease(s). I suspect you have multiple autoimmune diseases (like I do) but you also have the cyst (tumor?) behind your eye (which I do not have) and I would not minimize the role that might be playing.

Yours is another shining example of why I constantly tell people not to ever give up on refining their diagnosis. I truly believe ME/CFS is just a cluster of symptoms that represents one or three or 20 or 100 different illnesses -- many of which are very rare, some of which haven't yet been discovered.
This is my feeling as well but you said it better than I could have @TenuousGrip! I suspect that there are hundreds of different illnesses (and combination of illnesses) represented on this board and not just one.

I mean I'm still not out of the dark yet and it doesn't explain all my symptoms (Visual Snow, Severe mental fatigue) but it explains all of the physical symptoms for sure! Something that still worries me is the sugar cravings. If I go 3 hours without food I start trembling.
I would really confirm that the visual symptoms are not from the cyst behind your eye. Also MG can cause visual symptoms and it seems that you have the MG autoantibody vs. the LEMS autoantibody (even though there is a lot of overlap). I did not have any visual symptoms although for many months, I get this burst of bright light out of the corner of my right eye. I have no idea if it relates to anything, and could be totally random, but eventually plan to see my eye doctor and get it checked out.

And your trembling after 3 hrs of not eating could be due to hypoglycemia. I suspect that your symptoms are caused by many different things and not just one. I am the opposite (b/c of MCAS) and can easily go for 24 hours without food and then there is less histamine in my body to cause any problems.

Just curious, with your symptoms do you also suffer from POTS/OI or no?
I was curious about this too (@crypt0cu1t). Do you have POTS? If you do, based on your total picture, I would wonder if it is Autoimmune POTS (like me) vs. another sub-type of POTS.

I just have not heard of autoimmunity being a consequence of ME/CFS.
I have not heard of autoimmunity as a consequence of ME/CFS but both of my doctors feel (in my case), it is a consequence of a virus that went out of control. When I had severe mono from EBV in 2012, I stayed IgM+ for EBV for about 3-4 years post mono before it finally went negative and they believe that I flipped from viral (plus severe mold/mycotoxin exposure) into autoimmunity. Someone with more science background could explain this much better than I ever could.

You've been given a rather solid diagnosis of LEMS, and I read that LEMS is rather rare, so I just think the odds are that it is the cause of your symptoms.
I don't disagree but I also doubt that LEMS is the cause of all his symptoms vs. some of them. Many people with autoimmunity have multiple things going on at the same time. When I was first diagnosed with Hashimoto's, I was told that it was like the "gateway" to other autoimmune diseases and nothing could have turned out to be more true in my case. I was also told that a virus caused the autoimmune attack on my thyroid to start (but was it the EBV or another virus, I will never know)?

I feel relieved to have a possible path of treatment to pursue but part of me still feels like "what if the IVIG doesn't work?"
I truly believe that the IVIG will help you and there is nothing to lose in trying it (IMO). But take all precautions that match with your unique situation. I had to be extra careful b/c of having MCAS and require a very slow infusion rate (over 2-3 days) to avoid third spacing and edema, etc. But once we figured it all out, it worked beautifully for me (minus insurance issues but that is another story).

I've tried dozens of things over many years and each time I come to an apparent dead end and think, oh there's nothing left, I've tried everything, I come across something I haven't tried yet, and I have made progress that way
I agree and there are always more things to try. I remember being extremely hopeless when Famvir & Valcyte did not work for me (but they were never the right things for my specific issues). We are all so different and unique.

Keep us posted how you do - you may be a trailblazer like @Gingergrrl has been!
Thanks @Mary but I really do not feel like a trailblazer. I learned of my doctor from this board and my other doctor from an MCAS group on FB. I also learned of my treatments from this board and from other groups. And @crypt0cu1t please keep us posted like Mary said!

If you are interested @crypt0cu1t , there are two private groups on FB (one for the calcium channel autoantibody and one for LEMS) that I belong to but have not posted in either in about eight months (when my mom got sick) b/c I just did not have time to keep up with everything and only post here on PR at present. I'd love to eventually go back to update them what happened re: my case. They will all be shocked that I can now walk a normal distance without a wheelchair and drive my car again.

Were you tested for P/Q and N type voltage-gated calcium channel antibodies too then? LEMS can have a particularly nasty bite in involving a paraneoplastic syndrome in some patients and these antibodies are often found in relation to having small cell lung cancer too so a chest x-ray and possibly a PET scan should be on the cards also if you have been sick with this for less than 5 years.
I was curious about this, too. @crypt0cu1t Were you tested for the N-type or P/Q type voltage gated Calcium Channel autoantibodies? If you have them and have LEMS, it can be paraneoplastic, meaning that there is a hidden cancer. You would want to have a high resolution lung cat scan, and most studies recommend to have them for five years as @kangaSue mentioned. The CA+ Channel auto-abs can correlate with small cell lung cancer (SCLC) in addition to LEMS. In my case, I have done the lung cat scan in 2015, 2016, and 2017 and all were clear. I am not sure if I will do another b/c the radiation exposure is so high. Although now that my mom passed away from colon cancer, I almost feel it is inevitable that I am eventually going to get cancer.

I got sick in 2011 but had a spontaneous remission for 6 years. Now its back worse than before
Hmm, in that case I don't know what the implications would be where a possible paraneoplastic syndrome is concerned.
I also am not sure what that means re: possible paraneoplastic syndrome (PNS) and is totally different than my case. Once I got sick, I never got even 1% better and continued to progressively get worse until these two treatments gave me this "remission" (for lack of a better word).

neurologist wrote down LEMS for me as suspected diagnosis
What was the LEMS diagnosis based on in your case @pibee? Did you test positive on EMG, or have the autoantibody, or just by symptom presentation? You can have sero-negative LEMS without the CA+ Channel autoantibody.

I have AChR Binding Antibodies. My original diagnosis was MG, but I just dont seem to fit into the diagnosis of it. Doctors have told me that AChR binding antibodies can be positive in LEMS in rare instances.
That is interesting and I did not realize that. I am negative for the AChR autoantibodies. Did you do the MG or MuSK panels from Mayo? (I was negative on those, too).

The CRP and ESR definitely confuse me as LEMS isnt inflammatory, so it must mean that I havr another autoimmune issue as well (sjogrens?)
My CRP and ESR are always in the normal range and I suspect that you have more than one thing going on.

If it were me, I would be wanting to have the equivalent of the Mayo PAVAL panel or DYS1 panel run even though their panel more specific for LEMS is the MGL1 panel.
https://www.mayomedicallaboratories.com/test-catalog/Overview/37427
https://www.mayomedicallaboratories.com/test-catalog/Overview/37428
https://www.mayomedicallaboratories.com/test-catalog/2011/Overview/83380
Thank you linking those panels @kangaSue and I have bookmarked your post. The three panels seem very similar and the one that I did was PAVAL. I will be repeating some panels after my 6th Ritux infusion in Aug to establish a new baseline. I am trying to decide which one to do since I know they will be very expensive. I feel like I should probably repeat PAVAL to be consistent but the other ones look interesting, too. They seem to really overlap and test the same things with just slight differences. I will have to study them in more depth before we decide.
 

crypt0cu1t

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@crypt0cu1t I have been wanting to reply to this thread for several days but had family staying w/me for two days, and then other family from out of town, and a dinner, etc. I saw that I got tagged and several PM's and really wanted to reply and am so sorry for the delay!



I do not know anything re: Sjogrens but I was curious how they ultimately confirmed your LEMS diagnosis? I was given a LEMS diagnosis based on having the N-type Calcium Channel autoantibody and the clinical symptoms of extreme muscle weakness which included my lungs and diaphragm. At one point, one of my doctors was afraid I was going to end up on a ventilator if the breathing weakness did not plateau.

My case was confusing though b/c I also have POTS, MCAS, Hashimoto's Disease, and other autoantibodies (beta-adrenergic, anti-muscarinic/cholinergic, anti GAD65, etc). But the LEMS (calcium) autoantibody combined with the severe muscle and breathing weakness was what confirmed it even though I was negative on EMG. The problem though was that the EMG was conducted VERY poorly, was stopped mid-way by the Neuro, and was not a "single fiber EMG" which is the gold standard for LEMS. But in spite of how poorly it was done, it showed only 57% functioning of my left phrenic nerve (to the diaphragm) which was labeled as "mononeuropathy of the left phrenic nerve" (which I guess can be part of LEMS but am still unclear on this)?

My next IVIG is later this week and 6th Rituximab infusion in early Aug. At present I have no muscle weakness and can even lift heavy boxes! Prior to these two treatments, I could not even turn on the faucets in my shower, open a water bottle, or open my front door. Any attempts to stand for more than 30-60 seconds or use my muscles left me completely breathless and this is now 100% gone. My POTS and MCAS are also in remission (although I continue to take meds for both and would not DARE touch them at this point).

I feel very confident that you will be a responder to IVIG but please do not give up if you are not "cured" in one treatment as it is a long-term commitment. I have been doing IVIG for (almost) two years and Ritux for (almost) one year. There is no cure for LEMS, MG, POTS, MCAS, Sjogrens, Hashimoto's, ME/CFS, or any of these illnesses to the best of my knowledge. The best we can hope for is remission.



I do not know and never diagnose anyone else (and it has been challenging enough to try to clarify my own diagnoses)! But my guess is that you never had ME/CFS vs. autoimmune disease(s). I suspect you have multiple autoimmune diseases (like I do) but you also have the cyst (tumor?) behind your eye (which I do not have) and I would not minimize the role that might be playing.



This is my feeling as well but you said it better than I could have @TenuousGrip! I suspect that there are hundreds of different illnesses (and combination of illnesses) represented on this board and not just one.



I would really confirm that the visual symptoms are not from the cyst behind your eye. Also MG can cause visual symptoms and it seems that you have the MG autoantibody vs. the LEMS autoantibody (even though there is a lot of overlap). I did not have any visual symptoms although for many months, I get this burst of bright light out of the corner of my right eye. I have no idea if it relates to anything, and could be totally random, but eventually plan to see my eye doctor and get it checked out.

And your trembling after 3 hrs of not eating could be due to hypoglycemia. I suspect that your symptoms are caused by many different things and not just one. I am the opposite (b/c of MCAS) and can easily go for 24 hours without food and then there is less histamine in my body to cause any problems.



I was curious about this too (@crypt0cu1t). Do you have POTS? If you do, based on your total picture, I would wonder if it is Autoimmune POTS (like me) vs. another sub-type of POTS.



I have not heard of autoimmunity as a consequence of ME/CFS but both of my doctors feel (in my case), it is a consequence of a virus that went out of control. When I had severe mono from EBV in 2012, I stayed IgM+ for EBV for about 3-4 years post mono before it finally went negative and they believe that I flipped from viral (plus severe mold/mycotoxin exposure) into autoimmunity. Someone with more science background could explain this much better than I ever could.



I don't disagree but I also doubt that LEMS is the cause of all his symptoms vs. some of them. Many people with autoimmunity have multiple things going on at the same time. When I was first diagnosed with Hashimoto's, I was told that it was like the "gateway" to other autoimmune diseases and nothing could have turned out to be more true in my case. I was also told that a virus caused the autoimmune attack on my thyroid to start (but was it the EBV or another virus, I will never know)?



I truly believe that the IVIG will help you and there is nothing to lose in trying it (IMO). But take all precautions that match with your unique situation. I had to be extra careful b/c of having MCAS and require a very slow infusion rate (over 2-3 days) to avoid third spacing and edema, etc. But once we figured it all out, it worked beautifully for me (minus insurance issues but that is another story).



I agree and there are always more things to try. I remember being extremely hopeless when Famvir & Valcyte did not work for me (but they were never the right things for my specific issues). We are all so different and unique.



Thanks @Mary but I really do not feel like a trailblazer. I learned of my doctor from this board and my other doctor from an MCAS group on FB. I also learned of my treatments from this board and from other groups. And @crypt0cu1t please keep us posted like Mary said!

If you are interested @crypt0cu1t , there are two private groups on FB (one for the calcium channel autoantibody and one for LEMS) that I belong to but have not posted in either in about eight months (when my mom got sick) b/c I just did not have time to keep up with everything and only post here on PR at present. I'd love to eventually go back to update them what happened re: my case. They will all be shocked that I can now walk a normal distance without a wheelchair and drive my car again.



I was curious about this, too. @crypt0cu1t Were you tested for the N-type or P/Q type voltage gated Calcium Channel autoantibodies? If you have them and have LEMS, it can be paraneoplastic, meaning that there is a hidden cancer. You would want to have a high resolution lung cat scan, and most studies recommend to have them for five years as @kangaSue mentioned. The CA+ Channel auto-abs can correlate with small cell lung cancer (SCLC) in addition to LEMS. In my case, I have done the lung cat scan in 2015, 2016, and 2017 and all were clear. I am not sure if I will do another b/c the radiation exposure is so high. Although now that my mom passed away from colon cancer, I almost feel it is inevitable that I am eventually going to get cancer.




I also am not sure what that means re: possible paraneoplastic syndrome (PNS) and is totally different than my case. Once I got sick, I never got even 1% better and continued to progressively get worse until these two treatments gave me this "remission" (for lack of a better word).



What was the LEMS diagnosis based on in your case @pibee? Did you test positive on EMG, or have the autoantibody, or just by symptom presentation? You can have sero-negative LEMS without the CA+ Channel autoantibody.



That is interesting and I did not realize that. I am negative for the AChR autoantibodies. Did you do the MG or MuSK panels from Mayo? (I was negative on those, too).



My CRP and ESR are always in the normal range and I suspect that you have more than one thing going on.



Thank you linking those panels @kangaSue and I have bookmarked your post. The three panels seem very similar and the one that I did was PAVAL. I will be repeating some panels after my 6th Ritux infusion in Aug to establish a new baseline. I am trying to decide which one to do since I know they will be very expensive. I feel like I should probably repeat PAVAL to be consistent but the other ones look interesting, too. They seem to really overlap and test the same things with just slight differences. I will have to study them in more depth before we decide.
Honestly they just went off of what Dr. Chheda said. I didn't know that an emg was required for diagnosis? They just said that alot of my symptoms do match up with LEMS and it makes sense. So they diagnosed me with an atypical form of LEMS with some elements of MG.
 

Gingergrrl

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I didn't know that an emg was required for diagnosis?
I do not believe (from the LEMS group that I mentioned which has a huge number of members worldwide) that an EMG is required for diagnosis. I had a standard EMG and nerve conduction test but they were very poorly conducted and was not a single fiber EMG which is the gold standard. I think the Calcium Channel autoantibody (ies) plus clinical symptoms would be enough without the EMG. There is vast differences of opinion among neuromuscular specialists re: LEMS and it is another diagnosis in which I know many people who were horribly mistreated by places like Mayo Clinic and told their symptoms were all psychiatric, etc.

So they diagnosed me with an atypical form of LEMS
I believe that I have an atypical case as well (combined with many other problems).
 

crypt0cu1t

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I do not believe (from the LEMS group that I mentioned which has a huge number of members worldwide) that an EMG is required for diagnosis. I had a standard EMG and nerve conduction test but they were very poorly conducted and was not a single fiber EMG which is the gold standard. I think the Calcium Channel autoantibody (ies) plus clinical symptoms would be enough without the EMG. There is vast differences of opinion among neuromuscular specialists re: LEMS and it is another diagnosis in which I know many people who were horribly mistreated by places like Mayo Clinic and told their symptoms were all psychiatric, etc.



I believe that I have an atypical case as well (combined with many other problems).
Yeah, I dont know if I buy into it. But if it will get me IVIG then im all for it!

I know I HAVE to have some kind of autoimmune encephalitis based on my declining mental abilities, but the good news is that IVIG should clear it up
 

Gingergrrl

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Yeah, I dont know if I buy into it.
Do you mean that you don't buy into if LEMS is a real diagnosis or are questioning if you have it? I wasn't sure which you meant?

It is definitely a real diagnosis and the reason I feel I have an atypical form is b/c my extreme, progressive muscle weakness was in my upper body (arms, diaphragm, lungs, neck, etc) but my legs were relatively normal vs. in most people with LEMS the muscle weakness begins in their legs. My doctor is certain that I have it based on my symptoms (prior to treatment), combined with the calcium channel autoantibody, and having such a profound response to high dose IVIG and Rituximab (which are both common treatments for LEMS).

Many in the group I belonged to were on a med called 3,4 DAP but I never pursued this b/c I was not even able to tolerate Mestinon (which is far less potent). But I think this is b/c I also have the anti-muscarinic/cholinergic autoantibodies and my case was so confusing.

I know I HAVE to have some kind of autoimmune encephalitis based on my declining mental abilities, but the good news is that IVIG should clear it up
I am still confused, have you been tested for the calcium channel autoantibodies or autoimmune encephalitis autoantibodies (like anti NMDA)?
 

crypt0cu1t

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Do you mean that you don't buy into if LEMS is a real diagnosis or are questioning if you have it? I wasn't sure which you meant?

It is definitely a real diagnosis and the reason I feel I have an atypical form is b/c my extreme, progressive muscle weakness was in my upper body (arms, diaphragm, lungs, neck, etc) but my legs were relatively normal vs. in most people with LEMS the muscle weakness begins in their legs. My doctor is certain that I have it based on my symptoms (prior to treatment), combined with the calcium channel autoantibody, and having such a profound response to high dose IVIG and Rituximab (which are both common treatments for LEMS).

Many in the group I belonged to were on a med called 3,4 DAP but I never pursued this b/c I was not even able to tolerate Mestinon (which is far less potent). But I think this is b/c I also have the anti-muscarinic/cholinergic autoantibodies and my case was so confusing.



I am still confused, have you been tested for the calcium channel autoantibodies or autoimmune encephalitis autoantibodies (like anti NMDA)?
Oh no. I know its a real diagnosis, but I just dont know if I actually have it lol sorry if I offended you!
I havent pursued mestinon or related medications any further because it seemed to exacerbate my dizziness.

I was tested and negative for lots of autoimmune encephalitis antibodies, but I heard a lot of the time having one autoimmune disease can greatly increase your chances of having autoimmune encephalitis if the symptoms fit.

It also doesnt help that sometimes the antibodies can be negative unless tested directly through csf.