Calcium Channel Antibodies

[Jan Grizzel]

<p style=”text-align: center;”>I have P/Q type and as of yet have not been diagnosed with LEMS which I understand is very rare according to my Emory Neurologist. I do have Dysautonomia and Ehlers Danlos and Chiari Malformation along with some yet unidentified inflammatory process going on. I’ve just had my P/Q testing again yesterday to see if changed</p>

[Price Wooldridge]

Hi Jan!
Elevated P/Q antibodies are definitive for LEMS. My bloodwork went to the Mayo Clinic in Rochester for results. I believe this is where most suspected LEMS bloodwork is sent. In their report back, they specifically say, with this result, a positive EMG test, and the proper clinical testing, the LEMS diagnosis is positive.
I’m unaware of many of the disorders you mention, but LEMS is an autoimmune disorder, and most of us have more than one. Please stay in touch and let us know how it goes for you. Getting the diagnosis can be a challenge.

[Ashley]

Hey @blessed

I was told the same as Price regarding the P/Q calcium channel antibodies. Usually, most neurologists believe if they antibodies are present, it is definitive for LEMS. I also have Dysautonomia caused by LEMS. I’m familiar with EDS and Chiari as they usually flock with Dysautonomia patients. I have an “unidentified” inflammatory process going on which my Rheumatologist has named “Undifferentiated Connective tissue disease” for now. When did you last have antibodies drawn? Typically, P/Q doesn’t change unless you receive immunoglobulin which can lower the levels of antibodies.

[Jan Grizzel]

Thank you both for responses. Ehlers Danlos is a connective tissue disorder as it affects the collagen with which our bodies are made up of. I didn’t realize that about the result staying the same (even though mine have thus far). I should hear back this week. I was curious if the result would climb upward without treatment. My result last year was 150.

[Tescha]

Good morning!  I have positive P/Q calcium channel AB.  Interesting story when I started my symptoms 8 years ago the neurologist then tested me for calcium channel Ab and my P/Q was slightly elevated at that time but I didnt know about it.  In dictation said believe it was false positive.  So July 2019 tested again elevated higher but EMG didnt support.  Repeated test Nov 2019 level higher then finally diagnosed with LEMs!

[Jan Grizzel]

Hey Tescha

Interesting. May I ask what your P/Q’s were and did you finally test positive on the EMG as well?  Are you taking any treatment now?
Thank you

[Tescha]

• @jangrizzle
• My most recent P/Q calcium channel AB was 0.17.   My EMG still normal.
• My current treatment is firadpse 20 mg QID.  Prednisone 20 mg daily, bactrim DS 3 days a week,  every 2 weeks plasmapheresis (mondays) followed with IVIG wed.  Propranolol 10 mg TID.

[Jan Grizzel]

Wow  So sorry you are having to use all of that for control – yet so thankful it is available and helpful.  Does anyone ever get to wean off the IVIG and Plasmapheresis?  Are you using the Propranolol for your Dysautonomia?  I am still awaiting my P/Q result.  My virtual appt. with the Emory Neurologist is next Tuesday the 27th.  trying to write down my questions and helpful meds I’ve seen on here. She has actually published an article in Medical Journals about LEMS, but can’t recall the name at the moment.

I noticed while reading through your back posts Tesha that you have vocal cord problems also.  My voice too gets very hoarse and weak after a busy day of talking or visiting and complete exhaustion.  I actually went through voice training at my ENT office several years ago to try to strengthen but it didn’t last.

[Price Wooldridge]

@blessed Jan, I’m not aware of LEMS patients weaning off IVIG. LEMS is a progressive disorder.

[Jan Grizzel]

Thanks Price for that info. I did wonder about that. I just read through @Carmens post on the AIP and have been thinking about that as well. If you see this @Carmen Willings I would be interested in seeing how this is going for you

[RDT]

I have both types! 😢 N & P/Q…

my panels like price are always sent to mayo and are monitored yearly. Apparently my NMN said the levels can change depending on how aggressive your LEMS is.

what’s interesting in my case is I just completed chemotherapy and now my N type levels are normal but my P/Q levels have doubled. Went from 0.07 to 1.15…🙀 Mayo lab report said, “<span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”>Current result modestly higher. * This profile, in the</span><span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”> </span><span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”>proper clinical context, would support autoimmune </span><span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”>encephalopathy. * “</span>

so apparently I was told rising levels of our types can lead to active autoimmune encephalitis!

[Price Wooldridge]

Interesting that you are doing repeat antibodies testing after diagnosis. I don’t recall others talking about this unless their diagnosis was in question. Because my understanding is immunoglobulin antibodies therapy alters the antibodies profile, I’ve never been retested since doing IVIG.

[RDT]

I’m not doing Ig therapy and therefore continue to get tested regularly to see if the treatments I am doing are helpful in being down antibody levels.

[RDT]

Oops I copied & pasted mayo findings which distorted comment. Tried to edit/delete, but wouldn’t let me. So here’s what I was trying to write now without the copy & paste error portion. Lol

 

 

 
<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 have both types!  N & P/Q…</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 panels like price are always sent to mayo and are monitored yearly. Apparently my NMN said the levels can change depending on how aggressive your LEMS is.</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%;”>what’s interesting in my case is I just completed chemotherapy and now my N type levels are normal but my P/Q levels have doubled. Went from 0.07 to 1.15…Mayo lab report said, “Current result modestly higher. * This profile, in the proper clinical context, would support autoimmune encephalopathy. *”</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 apparently I was told rising levels of our types can lead to active autoimmune encephalitis</p>