Mayo Dysautonomia Panel Questions

[jayut]

Hello,

My doc ordered the Mayo Panel around August of 2017. My results were:

1. Positive N-Type Calcium Channel ab = 0.10 (Normal < 0.03)
2. Positive Neuronal K+ Channel ab = 0.07 (Normal < 0.02)

As a result, I was diagnosed with LEMS and completed a trial of 4 IVIG infusions in late Oct 2017.  I then got aseptic meningitis 1.5 weeks after the last IVIG infusion. We hit the breaks hard and never followed up with IVIG therapy or IVIG boosters.

However, in hindsight, December, January, and February were the best months I have had in 5 years. Makes me think that maybe the IVIG did have a positive affect.

I crashed hard in late February and ran another Mayo Dysautonomia Panel 3 weeks ago. Unsurprisingly, the results came back as follows:

1. Positive N-Type Calcium Channel ab = 0.51 (Normal < 0.03)
2. Positive Neuronal K+ Channel ab = 0.03 (Normal < 0.02)

Now I am completely perplexed. Doc appears to be on the fence and is not sure if this a true or false positive. A part of me wonders if he is nervous, because of my aseptic meningitis complication. Can anyone provide some advice or thoughts? What should I fight for?

[jayut]

I found the following on the Mayo Site for DYS1 test.

 

Interpretation 

Antibodies directed at onconeural proteins shared by neurons, muscle, and glia are valuable serological markers of a patient's immune response to cancer. These autoantibodies are not found in healthy subjects, and are usually accompanied by subacute neurological symptoms and signs. It is not uncommon for more than 1 autoantibody to be detected in patients with autoimmune dysautonomia. These include:

-Plasma membrane cation channel antibodies (neuronal ganglionic [alpha-3] and muscle [alpha-1] acetylcholine receptor; neuronal calcium channel N-type or P/Q-type, and neuronal voltage-gated potassium channel antibodies). All of these autoantibodies are potential effectors of autonomic dysfunction.

-Antineuronal nuclear autoantibody-type 1

-Neuronal and muscle cytoplasmic antibodies (CRMP-5 IgG, glutamic acid decarboxylase and striational)

 

A rising autoantibody titer in previously seropositive patients suggests cancer recurrence.

Cautions 

Negative results do not exclude autoimmune dysautonomia or cancer.

[p8d]

Why not try subcutaneous IG?  I tested negative on the Mayo panel but positive on the Celltrend one and was diagnosed with UCTD after my pots diagnosis.  That, along with viral onset and a strong family history of autoimmune disease convinced my cardiologist, neurologist and pharmacy benefits manager to try IG.  I was too chicken to try IVIG because of a history of migraines and I feared asceptic meningitis so we went with SCIG.  It takes longer than IV to hit the loading dose and see positive effects but it’s better than meningitis.  I infuse weekly at home.  It’s very easy.  It’s not improving BP/HR yet but it’s slowly helping a number of other symptoms.  I started in November and hit my loading dose 5 weeks later.  I was told it would be another 5 weeks to see any improvement and then that should increase with time.  That’s about what happened.  I still flare but I am hopeful.

[jayut]

@p8d Thanks for the update. Please continue to provide updates. This seems very encouraging for you and gives me hope.

 

Shotgunning by adding a few other folks with very old auto-immune history.

 

@HyperPOTS8 @Natops @Miqual @diabeticgonewild @Shellee

[Natops]

7 hours ago, p8d said:

Why not try subcutaneous IG?  I tested negative on the Mayo panel but positive on the Celltrend one and was diagnosed with UCTD after my pots diagnosis.  That, along with viral onset and a strong family history of autoimmune disease convinced my cardiologist, neurologist and pharmacy benefits manager to try IG.  I was too chicken to try IVIG because of a history of migraines and I feared asceptic meningitis so we went with SCIG.  It takes longer than IV to hit the loading dose and see positive effects but it’s better than meningitis.  I infuse weekly at home.  It’s very easy.  It’s not improving BP/HR yet but it’s slowly helping a number of other symptoms.  I started in November and hit my loading dose 5 weeks later.  I was told it would be another 5 weeks to see any improvement and then that should increase with time.  That’s about what happened.  I still flare but I am hopeful.

@p8d  I remember my nurse holding my bottle of IVIG and saying I hope I don't drop this - it cost $7,000.  That was for one day.  Is subcut IG cheaper?

[p8d]

@NatopsMaybe but I doubt it.  I believe it’s more concentrated.  The dose is based on weight so I infuse 30mls/week.  Because my insurance covers it I don’t know the actual cost but I am very careful with the vials!

[bombsh3ll]

On 4/18/2019 at 4:27 PM, jayut said:

Now I am completely perplexed. Doc appears to be on the fence and is not sure if this a true or false positive. A part of me wonders if he is nervous, because of my aseptic meningitis complication. Can anyone provide some advice or thoughts? What should I fight for?

Have you tried plasmapheresis? It gets rid of autoantibodies without the risks of IVIG. It tends to be short lived but could give you a helpful pointer re further immune treatment. 

B x

[toomanyproblems]

I get IVIg every three weeks, 60g over two days, a pretty big dose. I just had my fifth cycle this time around. Last spring/summer when I had it a few rounds of it, it helped a lot of my autoimmune problems, including my dysautonomic problems. It's been really hard getting insurance to cover even though I demonstrated clear benefits so I was not able to continue last time long enough to find out if it would actually correct my HR upon standing even though it largely corrected my symptoms. But it corrected things that had been assumed to be irreversible like my gastroparesis. Maybe sometime this summer, with consistent treatment now that insurance is covering, I'll be able to determine the full benefits. I do have adverse effects, mostly brain swelling that manifests as severe headaches but it's worth it to me because it helps so many of my autoimmune based problems.     

[Clb75]

Have you tried slowing the infusion rate or dividing it up over two days? Also, drinking tons of water before, during and after the infusion helps a lot too. Ivig is like oil in your veins. I get a 500ml bag of saline after my infusion and it helps with this.  I also get an iv steroid at the end of the infusion which helps with the headaches. Maybe you could try it again if your doctor changes up a few things. Unfortunately like everything else, it’s often a trial and error process.

[jayut]

All great ideas. We did chase the initial IVIG with Saline, but I don't know how much. Also, I did stay very well hydrated before, during and after IVIG. We didn't try a slower infusion rate. The nurse kept checking my HR and BP during infusion and everything was great so they kept their standard infusion rate. It is odd that I didn't get the aseptic meninigitus until 1.5 weeks later. RX doc said he had never seen or heard of delayed aseptic meningitis and thought this was extremely strange. It took almost 2 weeks of Tylenol, Advil, and Prednisone to get the aseptic meningitis knocked down. It was terrible. It all escalated on Oct 31, Halloween. My daughters first Halloween to dress-up and she was old enough to be aware of what was happening. I ended up spending the night on the phone with the on-call doc trying to figure out what was happening and why my temperature was 104F. I hate when this illness gets in the way of some of the special moments.

My current doc seems extremely cautious after my aseptic meningitis complication. As a result, he is trying to refer me to Dr. Steven Vernino. It's my understanding that Dr. Vernino helped design the Mayo DYS1 test. I hope this referral goes through.