My first visit to see Dr Klimas and team (Success in the End)

[Belbyr]

Dr Klimas will check you for a lot of things to rule out. She was able to find a few things that Mayo Clinic and several major research hospitals could not find. The draw back was she didn’t know what to do about the abnormalities.

So I am still stuck with illness and no real treatment.

 

[Learner1]

Dr Klimas will check you for a lot of things to rule out. She was able to find a few things that Mayo Clinic and several major research hospitals could not find. The draw back was she didn’t know what to do about the abnormalities.

So I am still stuck with illness and no real treatment.

Curious, what did she find?

 

[bread.]

I'm back home now. My Calcium has always been right at the very top of the normal range. I was checked on PTH a while back but I think we need to check again.

I have been having really bad rib and back pain the last 4-5 days.

Cancer doctor finally called me Friday afternoon, he wants me back in his office on Tuesday for more blood work and a possible bone marrow biopsy. He said the current abnormal tests are non specific but do throw a yellow flag. My guess is some type of blood cancer.

I do not know what you have, but we have the same:

Borderline Calcium
High beta2 Microglubulines
Kidney stones

 

[Learner1]

Kidney stones

Are you on a low Oxalate diet, as well as taking magnesium or potassium citrate with each meal as well as additional P5P?

 

[Belbyr]

It's been a while since I have updated this thread but I have finally figured out my problem.

I am positive for a N Type Calcium Channel Autoantibody via a Neuromuscular panel done by University of Louisville Gastro clinic with Dr Stocker.

I'm finally able to breathe a big sigh of relief knowing that what I have been suffering from is real and it's proven now. I have a lot of doctors from my past that I now have to inform of the new finding.

I'm approved for IVIG and will begin a 12 week therapy plan at 1 dose per week and then see where I stand at the end of those 12 weeks. I'm going to update my original post so everyone can see it.

 

[ljimbo423]

It's been a while since I have updated this thread but I have finally figured out my problem.

I am positive for a N Type Calcium Channel Autoantibody via a Neuromuscular panel done by University of Louisville Gastro clinic with Dr Stocker.

Great news Belbyr! I hope the IVIG goes well!

 

[Gingergrrl]

I am positive for a N Type Calcium Channel Autoantibody via a Neuromuscular panel done by University of Louisville Gastro clinic with Dr Stocker.

It is great to hear your update @Belbyr and I am also positive for the N-type Calcium Channel Autoantibody and discovering it ended up being the turning point in my illness. Did your doctor at the Gastro Clinic test you with one of the Mayo Panels (PAVAL or DYS2) or was it a non-Mayo Panel? Also, do you know how elevated your autoantibody was on the test?

I was also curious if your doctor felt the calcium channel Ab explained your GI symptoms (or did you test positive for other additional GI autoantibodies, too)? If I remember correctly (and now I want to re-read this entire thread!), your most severe symptoms were GI related? Or did you also have severe muscle weakness and POTS?

I'm finally able to breathe a big sigh of relief knowing that what I have been suffering from is real and it's proven now. I have a lot of doctors from my past that I now have to inform of the new finding.

It sounds like you have excellent doctors but I want to make sure that they told you that the N-type CA+ Channel Ab often correlates with LEMS (Lambert Eaton Myasthenic Syndrome) and/or SCLC (Small Cell Lung Cancer). Did they advise you to do a high resolution lung cat scan (if you haven't already done one)? The calcium channel Abs can be paraneoplastic (related to an underlying cancer) or autoimmune in nature and no cancer will ever be found.

I did three lung cat scans (over three consecutive years) and in March 2021, it will be 5-years since I discovered that I had the autoantibody. Most of the literature says if you do not find an underlying cancer within 5-years, it is pretty unlikely that you ever will (re: the Ab). And some literature says 2-3 years (vs. 5-years) and my doctor agreed with this. Also, if you have a bunch of other autoantibodies (I had eleven at the point that we stopped counting), it is also more likely that your entire system is in a state of "autoimmune chaos" (as my doctor called it at the time) vs. it being paraneoplastic.

I belong to two private medical groups on Facebook (one for people w/the N-type Calcium Channel Ab and one for LEMS). If you are interested, let me know and I will PM you the info. I am not a big fan of Facebook but those two groups were extremely helpful to get info re: the calcium channel Abs. And strangely, almost every single member in the CA+ Channel Ab group, also had POTS like I did (but we are not really sure why).

I'm approved for IVIG and will begin a 12 week therapy plan at 1 dose per week and then see where I stand at the end of those 12 weeks. I'm going to update my original post so everyone can see it.

My doctor (back in 2016) felt that high dose IVIG was the best and the only logical treatment for me moving forward and I did it for two years. At the one year mark, I also started Rituximab and those two treatments put me into remission (but I never had any GI symptoms like you did).

If I recall correctly, your B-cells (CD19) also tested abnormally high. Did you ever figure out why and are your B-cells still elevated? Did you ever do any more in depth B-cell testing?

 

[kangaSue]

I am positive for a N Type Calcium Channel Autoantibody

That could certainly explain all the GI problems.
I can't fathom why it's not common to check for this antibody when the clinical picture is one involving dysautonomia and severe GI dysmotility refractory to any medications. You alluded to Autoimmune Gastrointestinal Dysmotility earlier in the thread, your antibody finding can crop up in this (or Autoimmune Autonomic Ganglionopathy) without there being a positive finding for ganglionic acetylcholine receptor antibody too (sero negative AAG).
The usual excuse, and one that has been used on me, was that "it's too rare to test for." It's always going to be 'rare' in that case. I did get tested in the end but had a titre considered in the 'normal range' and no other antibody tests supported an autoimmune cause of GI dysfunction.

 

[Belbyr]

It is great to hear your update @Belbyr and I am also positive for the N-type Calcium Channel Autoantibody and discovering it ended up being the turning point in my illness. Did your doctor at the Gastro Clinic test you with one of the Mayo Panels (PAVAL or DYS2) or was it a non-Mayo Panel? Also, do you know how elevated your autoantibody was on the test?

I was also curious if your doctor felt the calcium channel Ab explained your GI symptoms (or did you test positive for other additional GI autoantibodies, too)? If I remember correctly (and now I want to re-read this entire thread!), your most severe symptoms were GI related? Or did you also have severe muscle weakness and POTS?



It sounds like you have excellent doctors but I want to make sure that they told you that the N-type CA+ Channel Ab often correlates with LEMS (Lambert Eaton Myasthenic Syndrome) and/or SCLC (Small Cell Lung Cancer). Did they advise you to do a high resolution lung cat scan (if you haven't already done one)? The calcium channel Abs can be paraneoplastic (related to an underlying cancer) or autoimmune in nature and no cancer will ever be found.

I did three lung cat scans (over three consecutive years) and in March 2021, it will be 5-years since I discovered that I had the autoantibody. Most of the literature says if you do not find an underlying cancer within 5-years, it is pretty unlikely that you ever will (re: the Ab). And some literature says 2-3 years (vs. 5-years) and my doctor agreed with this. Also, if you have a bunch of other autoantibodies (I had eleven at the point that we stopped counting), it is also more likely that your entire system is in a state of "autoimmune chaos" (as my doctor called it at the time) vs. it being paraneoplastic.

I belong to two private medical groups on Facebook (one for people w/the N-type Calcium Channel Ab and one for LEMS). If you are interested, let me know and I will PM you the info. I am not a big fan of Facebook but those two groups were extremely helpful to get info re: the calcium channel Abs. And strangely, almost every single member in the CA+ Channel Ab group, also had POTS like I did (but we are not really sure why).



My doctor (back in 2016) felt that high dose IVIG was the best and the only logical treatment for me moving forward and I did it for two years. At the one year mark, I also started Rituximab and those two treatments put me into remission (but I never had any GI symptoms like you did).

If I recall correctly, your B-cells (CD19) also tested abnormally high. Did you ever figure out why and are your B-cells still elevated? Did you ever do any more in depth B-cell testing?

I’m not sure if it’s an in house panel that they ran or if it was a send off... They are mailing me the hard copies. The doctor 100% feels this is what is behind my illness. She stated it is a ‘neuromuscular’ immune panel, therefore is can cause all of the neurological and muscular symptoms I am having.

She thinks because I have just the one autoantibody and not multiple, that I ‘should’ do well with therapy.

I highly suggest anyone dealing with gastro symptoms needs to see these people. They are much more cutting edge than Wake Forest or Mayo in my experience.

I’m passing this info along to my local autonomic/neurology center tomorrow at my appointment. I will ask about the LEMS and small cell cancer. I don’t know exactly how this ties to the elevated B cells just yet...

 

[Zebra]

Hi @Belbyr

As someone who followed and contributed to your thread in 2019, I am absolutely THRILLED to see your update!!

I am so happy for you that you and your doctor feel this antibody against your n type calcium channels fits your symptoms, and I pray that your treatment plan will restore your health!

When you get your hardcopy test results, would you kindly share more information about this "neuromuscular panel"?

Such as, 1) where the testing was performed, and 2) what antibodies were tested besides the n type calcium channel antibody?

There are a few of us on PR that have such severe GI dysmotility that we are reliant on feeding tubes, but still struggle with horrific pain and low BMI due to lack of adequate nutrition. We also might not be physically able to travel to Kentucky for evaluation, although perhaps in the age of COVID a preliminary video consult could be arranged -- so thank you for spreading the word about where you found answers and treatment!

When you get your hardcopy results, any further information you feel comfortable sharing about your blood work and the diagnostics performed at University of Louisville, would be wonderful service to those of us still fighting for answers.

I thank you for sharing your entire journey with us, and again, I am genuinely THRILLED for you @Belbyr and hope IVIG will restore your health.

Warmly,
Z

 

[Gingergrrl]

I’m not sure if it’s an in house panel that they ran or if it was a send off... They are mailing me the hard copies. The doctor 100% feels this is what is behind my illness. She stated it is a ‘neuromuscular’ immune panel, therefore is can cause all of the neurological and muscular symptoms I am having.

If I had to bet money (which I do not ), my guess is that they sent your blood sample to Mayo Clinic lab and ran one or more panels. There are multiple Mayo Panels that look for autoimmune causes of neuromuscular issues, of autonomic disorders, of gastrointestinal disorders, etc, and many of these panels test for overlapping autoantibodies.

The Mayo Panels that I had in 2016 were PAVAL (for paraneoplastic autoantibodies) and in my case it is how they found that I was positive for the N-type Calcium Channel autoantibody and also for anti GAD65. I also had Panels to check for Myasthenia Gravis and MuSK autoantibodies (which were negative for me). Then in 2018 my doctor ran the Mayo DYS2 Panel for Autoimmune Dysautonomia (which again confirmed that I was positive for the same two autoantibodies: the N-type Calcium Channel autoantibody and anti GAD65).

We did not run any Mayo Autoimmune GI panels on me (b/c my core symptoms related to muscle/breathing weakness and dysautonomia). But in your case, I am guessing that they ran the Mayo Panel called "GID2" (or a very similar one) and I will post the link:

https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/92120

I want to add that even though this link is talking about cancer (like all Mayo Panels for the anti-neuronal or paraneoplastic autoantibodies), it does NOT mean that you have cancer! Even though I tested positive for two autoantibodies from these panels, I did not have cancer and still do not have cancer nearly five years later. These panels confirmed, in my case, that autoimmunity was the core of my entire illness b/c I had eleven autoantibodies total (including the two Mayo Abs). My illness started post-viral (after severe Mono/EBV) and was initially identical to many stories on PR but then flipped into autoimmunity.

I’m passing this info along to my local autonomic/neurology center tomorrow at my appointment.

Yes, please discuss with your Neuro re: the correlation between the N-type Calcium Channel Autoantibody and LEMS (Lambert Eaton Syndrome) and Small Cell Lung Cancer. It does NOT mean that you have either but there is a high correlation between this autoantibody and both illnesses and you would ideally want to have a high resolution lung cat scan to confirm there is no cancer.

Do you have any neuromuscular weakness in addition to the GI problems? Also, when you get the results, if you are comfortable sharing, can you let us know what your actual level was for the Calcium Channel Ab?

@kangaSue I was curious (from your GI expertise), how does the N-type VGCC Ab relate to GI issues? Is the connection that in some cases it weakens the muscles of the GI system vs. other parts of the body (like it did in my case)?

I will ask about the LEMS and small cell cancer. I don’t know exactly how this ties to the elevated B cells just yet...

I am so glad you will be asking them about this! I am also unclear re: the connection to your elevated B-cells but am very curious to learn more. Rituximab was miraculous for me b/c it wiped out my B-cells that created the autoantibodies that were weakening my muscles/breathing. But in my case, I did not have elevated B-cells prior to starting treatment (or at any point). My B-cells were always normal as far as the number of B-cells but they were creating the pathogenic autoantibodies.

 

[Belbyr]

I will scan and post the results here when I get them in hand. I was hoping they would be in the mail today but no luck.

I really hope some of these groups like Dysautonomia International or OMF would reach out to Louisville neurology and gastroenterology clinics to learn and share information. I've been on the phone all afternoon leaving messages for past doctors. I just forgot to call Dr Grubb and Dr Chemali's offices .

Yes I do have muscular issues outside the stomach smooth muscle. My skeletal muscles have always been very taught and I've become accustomed to chronic trigger points throughout. Physical therapist and pain specialists have not been able to make any headway in that area. When I mentioned the findings to the physical therapist, he started rapping off what all the calcium receptors do in the body. He was pleased to hear the news.

 

[Gingergrrl]

@Belbyr Dysautonomia International is very aware of Autoimmune Dysautonomia and they had a researcher contact me last year to see if I would be open to having my doctor write a case study about my case and remission from IVIG & Ritux which I completely was but everyone (my doctor and the researchers) were super busy and that was before COVID hit!

So it’s unlikely to happen any time soon but I wanted you to know that DI is completely aware of Autoimmune Dysautonomia and several doctors actively research this (the two that you mentioned, Dr. Grubb and Dr. Chemali, plus Dr. Vernino, Dr. Schofield, etc). My doctor is also very aware of the Mayo Panels. I wish more patients whose illness started off post-viral could be tested for autoantibodies.

One other thing I wanted to mention to you (since you haven’t talked to your doctor yet) is that you will want to avoid taking any meds in the future that are calcium channel blockers (so you do not further block the calcium channel). They will probably have you do an EMG and nerve conduction test of your muscles.

 

[kangaSue]

@kangaSue I was curious (from your GI expertise), how does the N-type VGCC Ab relate to GI issues?

To tell the truth, I have no idea why some people with VGCC antibodies only have a GI involvement from it. In a lot of cases, they will also have ganglionic acetycholine receptor antibodies along with it too though.

As you mentioned, Mayo's GID2, DYS2 and PAVAL panels have a significant overlap in the antibodies tested for and that are known to have neuromuscular effects. Quest Diagnostics also look cover the same in their Paraneoplastic Evaluation Panel so I would think other major pathology testing labs will have a similar thing.
https://testdirectory.questdiagnostics.com/hcp/intguide/Immuno/CF_Paraneoplastic_Syndromes_Fig1.pdf

 

[wigglethemouse]

Quest Diagnostics also look cover the same in their Paraneoplastic Evaluation Panel so I would think other major pathology testing labs will have a similar thing.
https://testdirectory.questdiagnostics.com/hcp/intguide/Immuno/CF_Paraneoplastic_Syndromes_Fig1.pdf

For those interested in autoimmune testing Quest Diagnostics have a more comprehensive panel 93888 - Autoimmune Neurology Antibody Comprehensive Panel with Reflexes, Serum. It seems to cover most of the same tests but has additional ones.
https://testdirectory.questdiagnost...-panel-with-reflexes-serum?p=r&q=93888&cc=MET

This is the flow chart for the test
https://testdirectory.questdiagnost...ody-comprehensive-panel-serum-test-code-93888

 

[wigglethemouse]

@Belbyr Quest has a table showing N type Voltage Gated Calcium Channel diagnosis can be LEMS or SCLC as @Gingergrrl has mentioned.
https://testdirectory.questdiagnost...Immuno/CF_Paraneoplastic_Syndromes_Table3.pdf

 

[Gingergrrl]

To tell the truth, I have no idea why some people with VGCC antibodies only have a GI involvement from it. In a lot of cases, they will also have ganglionic acetycholine receptor antibodies along with it too though.

Thanks and no worries and I was just curious!

As you mentioned, Mayo's GID2, DYS2 and PAVAL panels have a significant overlap in the antibodies tested for and that are known to have neuromuscular effects. Quest Diagnostics also look cover the same in their Paraneoplastic Evaluation Panel so I would think other major pathology testing labs will have a similar thing.

There is definitely a great deal of overlap between the different Mayo Panels. I have been told by several doctors that the Quest Panels (for paraneoplastic autoantibodies) are not as precise and that it is better to do the Mayo Panel (if given the opportunity to choose which I know is not always possible).

@Belbyr Quest has a table showing N type Voltage Gated Calcium Channel diagnosis can be LEMS or SCLC as @Gingergrrl has mentioned.
https://testdirectory.questdiagnost...Immuno/CF_Paraneoplastic_Syndromes_Table3.pdf

I had not seen that chart before @wigglethemouse and it is amazing and I just printed it out. In addition to the N-type Calcium Channel Autoantibody, I also tested positive at a fairly high level for anti GAD65. In addition to the cancer and autoimmune conditions listed in that chart for anti GAD65, it can also correlate with diabetes (which I do not have) and with Autoimmune Thyroid Disease and Dysautonomia (both of which I do have). These autoantibodies are super sneaky

 

[dahsar]

I'm glad that IVIG worked for you guys! say 12 weeks of IVIG?

 

[Zebra]

Hi, @Belbyr

I hope your IVIG treatment is going swimmingly!

I am hoping you'll revisit this thread to share a bit more about the *final* stages of your work up before you landed on the antibody your doctor feels is responsible for your illness.

As mentioned in an earlier post, I appreciate you letting us know that you found help at the University of Louisville!

Prior to the antibody testing, what type of GI diagnostics did they put you through?

Things like: endoscopy/colonoscopy (biopsies), gastric emptying study, esophageal manometry, small bowel manometry, breath testing, and so on and so forth.

Was there a particular diagnostic finding, GI or other, that prompted your doctor to run the antibody panel?

If you would please consider responding to the questions above, I would really appreciate it. You'd be providing hugely valuable information to those still searching for answers.

Thank you!

 

[Belbyr]

Louisville looked through all of my testing and felt like they had a clear enough picture of what is going on. They just ran the autoimmune panel and thats where they found it. Funny thing is that antibody was negative about a year ago on a different panel through a different doctor. I remember Dr Goodman at a POTS conference said his patients are like moving targets that have to be retested at every checkup.

I have completed my third treatment of IVIG. I have had reactions but not terrible, the problem is it seems within the last week it is pushing me further down in a hole. The nurse said I should see a difference by week 4, but I'm not too hopeful.