Lambert-Eaton Myasthenic Syndrome (LEMS) Confirmed!

[crypt0cu1t]

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?

 

[Mary]

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 so glad you've gotten a diagnosis which can lead to appropriate treatment!

I'm not an expert but I think it's very likely you may have been dealing with an autoimmune condition and not ME/CFS, though @Learner1 and @Gingergrrl are more knowledgeable about this than me --

 

[StarChild56]

@crypt0cu1t - This is great news I am so happy that you have treatment options!

 

[TenuousGrip]

How many places could you come and have people cheering for/with you because you found out that you're sick ?

We all know we're sick. Getting a diagnosis that drives a safe, effective course of treatment is huge. Epic.

I'm really happy for you ... particularly knowing how low you've been.

Reset the clock ... if you know what I mean. Your journey starts anew now.

And may it be all onward and upward from here.

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.

All the best !

 

[Learner1]

Is it possible that I never had ME/CFS and it was just autoimmune the whole time?

ME/CFS is just a set of symptoms. Many of us have a lot of different diagnoses as well.

Glad you found something that's treatable!

. 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.

Likely so...

 

[crypt0cu1t]

ME/CFS is just a set of symptoms. Many of us have a lot of different diagnoses as well.

Glad you found something that's treatable!


Likely so...

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.

 

[crypt0cu1t]

@crypt0cu1t - This is great news I am so happy that you have treatment options!

Thanks!

 

[crypt0cu1t]

How many places could you come and have people cheering for/with you because you found out that you're sick ?

We all know we're sick. Getting a diagnosis that drives a safe, effective course of treatment is huge. Epic.

I'm really happy for you ... particularly knowing how low you've been.

Reset the clock ... if you know what I mean. Your journey starts anew now.

And may it be all onward and upward from here.

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.

All the best !

I completely agree! While this doesnt explain every symptom. It means that its very likely I could have some undiscovered antibodoes causing symptons as well!

 

[TenuousGrip]

You might find this interesting:

https://www.ncbi.nlm.nih.gov/pubmed/25993122

CONCLUSIONS:
A significant number of patients reported ophthalmic symptoms, and many had objective findings on clinical examination consistent with these symptoms. To our knowledge, this is the largest case series of ophthalmic findings in patients with LEMS and indicates that these patients warrant a complete ophthalmic examination.

 

[crypt0cu1t]

You might find this interesting:

https://www.ncbi.nlm.nih.gov/pubmed/25993122

That is pretty interesting actually! Then that just leaves the mental confusion/fatigue

 

[TenuousGrip]

Then that just leaves the mental confusion/fatigue

https://rarediseases.info.nih.gov/diseases/6851/lambert-eaton-myasthenic-syndrome

Lambert Eaton myasthenic syndrome (LEMS) is a disorder of the neuromuscular junction. The neuromuscular junction is the site where nerve cells meet muscle cells and help activate the muscles.[1] This syndrome occurs when antibodies interfere with electrical impulses between the nerve and muscle cells. It may be associated with other autoimmune diseases, or more commonly coincide with or precede a diagnosis of cancersuch as small cell lung cancer. Symptoms may include muscle weakness, a tingling sensation in the affected areas, fatigue, and dry mouth.[1] Treatment of an underlying disorder or cancer is the first priority of treatment.[2]

Fatigue doesn't always cause/mean cognitive dysfunction but it definitely can contribute.

 

[Dakota15]

Happy about this news for you @crypt0cu1t ! Definitely keep us updated if any of the treatment provides relief for you and I'll definitely be cheering for you.

Just curious, with your symptoms do you also suffer from POTS/OI or no?

 

[crypt0cu1t]

Happy about this news for you @crypt0cu1t ! Definitely keep us updated if any of the treatment provides relief for you and I'll definitely be cheering for you.

Just curious, with your symptoms do you also suffer from POTS/OI or no?

I never have been too sure, my vision occasionally blacks out when standing I get super dizzy when standing so maybe?

 

[crypt0cu1t]

I'm so glad you've gotten a diagnosis which can lead to appropriate treatment!

I'm not an expert but I think it's very likely you may have been dealing with an autoimmune condition and not ME/CFS, though @Learner1 and @Gingergrrl are more knowledgeable about this than me --

What exactly makes you think this? Im just curious if I was dealing with autoimmunity the whole time or if the autoimmunity is a consequence of MECFS

Hopefully im making sense

 

[Mary]

What exactly makes you think this? Im just curious if I was dealing with autoimmunity the whole time or if the autoimmunity is a consequence of MECFS

Hopefully im making sense

You're making sense. I just have not heard of autoimmunity being a consequence of ME/CFS. There are people with autoimmune conditions who do have ME/CFS but I don't think ME/CFS causes autoimmune conditions. Of course you could have both but I go with the most obvious explanation first. 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'm afraid I cannot get any more scientific than that, but hopefully someone else here can!

 

[crypt0cu1t]

You're making sense. I just have not heard of autoimmunity being a consequence of ME/CFS. There are people with autoimmune conditions who do have ME/CFS but I don't think ME/CFS causes autoimmune conditions. Of course you could have both but I go with the most obvious explanation first. 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'm afraid I cannot get any more scientific than that, but hopefully someone else here can!

Thanks for the reply! 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?" Partly because I have been let down so many times by different treatments. The only one that has even come close to having an effect is curcumin and LDN.

 

[Mary]

Hi @crypt0cu1t - I suggest you take one thing at a time. Don't worry about what if this or that. 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'm fortunate that my brain is curious. If one thing doesn't work, instead of feeling hopeless, it wants to figure out why and try something else. I love detective stories so that may be part of it!

Keep us posted how you do - you may be a trailblazer like @Gingergrrl has been!

 

[crypt0cu1t]

Hi @crypt0cu1t - I suggest you take one thing at a time. Don't worry about what if this or that. 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'm fortunate that my brain is curious. If one thing doesn't work, instead of feeling hopeless, it wants to figure out why and try something else. I love detective stories so that may be part of it!

Keep us posted how you do - you may be a trailblazer like @Gingergrrl has been!

I will definitely keep everyone updated, thanks for answering my questions btw!

 

[lafarfelue]

Congratulations on receiving a tangible diagnosis! That's fantastic.

Will be thinking of you for the remaining MRI etc, and keep an eye out for your next update(s). Wishing you continued positive action/assistance!

 

[kangaSue]

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.

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.