What is the most Positive Antibodies you have ever heard of being positive at one time? I went to see a specialist today and my bloodwork from March came back with 4 positives. He said it was the most complex case he had seen. My wife is sorting through all this as I type. Will post the different positive results in the morning.
Mike

Mike, What do you mean by 4 antibodies? There's only the binding and modulating. They can do the blocking but they're not done much anymore (due to Mayo saying they aren't necessary). Did they run the tests 4 times?

Remember, antibody levels do NOT necessarily reflect clinical severity. They need to go on the clinical exam, how easily you fatigue after activities, etc. Have you had breathing tests lately to see how that's going?

So, how are YOU doing?


Annie

My wife is still sorting through the results but it was binding, modulating, channel and skeltal. I finished my 24 IVIG treatments and by the day of the 24th I was ready to order a wheelchair. Woke up on the day of the 24th and my legs had returned to normal it was just unbelievable. We are not sure if it was because of reduction of Pred or Cellcept kicking in. My neuro-muscular Dr felt it was reduction of Pred. He said the Pred was causing a severe effect on my leg muscles. So to say how I'm doing, great right now just hoping this lasts a bit.
Thanks
Mike

Mike, I'm so glad to hear you finally have an improvement!

Abby

My legs were really bad. I could only lift my left foot 6 inches with max effort. Thought it was wheelchair time then OVERNIGHT the strength returned. We are now sure IVIG is a waste of time on me. Not sure what is next. Thanks for your thoughts.
Mike

Mike, Which channel antibodies were positive? Good grief!

Please refresh my memory, did you have a thymectomy? How high were the skeletal antibodies? If they are high, they may have to recheck your thymus for a tumor!

With so many antibodies, I'm really surprised that they didn't check blocking. They can still do that test.

So you might indeed have BOTH MG and CMS. You really should head to Mayo for more specialized testing! Can you do that? It's quite a difficult thing to do when you aren't doing so hot. The only reason is that there might be treatments your docs aren't considering, like 3,4 DAP.

I'll bet you really threw them for a loop. I'm sorry you are dealing with all of this.


Annie

Given that some studies implicate a virus in the genesis of MG, have your docs thought about checking some other basic testing?

Paperwork said Channel P/Q

They checked my Thymus 2 years ago and it was fine.

The Skeletal antibodies were 640.

I'm pretty sure he checked blocking. The bloodwork was 4 full pages from Athena.

The doctor I saw was a neuro-muscular at the ALS Center. He is the best in this area on MG. He is consulting with my regular neuro and they are coming up with a plan of attack. Meanwhile they are getting me off Prednisone as quickly as possible. He felt that was causing all my problems in my legs. So far they have discussed Plex as a temporary thing and refering me to Duke or Wake Forest.
Mike

Mike, I didn't bring up Mayo because they're somehow better than other medical centers! I actually have an opposite opinion, having been "cared for" by them. However, they are one of two places in the country that can do the specific CMS blood tests or other testing. The other places cannot do that! Well, they can send off blood to be tested but that's not the same as having CMS experts to talk to.

So do they think you have LEMS?

http://www.ncbi.nlm.nih.gov/pubmed/9883867

Does Athena list the results as a %? 640 is pretty high on any scale!

http://www.mayomedicallaboratories.c.../Overview/8746

If you do have some kind of paraneoplastic situation, immunosuppression would not be good! I know, you don't want MG to kill you either.

Having both MG and LEMS antibodies presents a complex medical conundrum. I can almost see institutions fighting over having you as a guinea pig. I'm making fun but this is pretty serious. And have they thought about testing your sister for the LEMS antibodies?

Things in the body change. Your thymus may have been fine 2 years ago but it may not be now or there may be some other area of your body that the channel P/Q is reflecting. You know how cancer stalks all of us as we age, especially after immunosuppression. I just hope your docs will not underestimate all of the studies that show the cancer risk for LEMS patients and those with a high striational muscle antibody test.

You know I wish nothing but the best for you. It's usually the things doctors "assume" are okay that end up hurting us. It sounds like your doctor was amazing and ordering all of those tests was super smart' as is your wife.

I hope someone gets to the bottom of this for you. You deserve to know what the heck is going on!


Annie

Will answer later. Gotta run some errands.
Mike

Mary gave me the results direct from the lab tests

Mayo:
1. ACH Recptor muscle binding AB....0.34
2. ACH Recptor modulating AB....78
3. Striationial ABS....1:30720

Athena:
1. Musk Negative

Local Lab: Lab corp Burlington, NC
1. ACH Recptor muscle binding AB....0.38
2. Calicum Channel binding AB P/Q type....0.08
3. ACHR Receptor binding RIA....7.50
4. Striationial...1:640

I am sending my sister copies of my bloodwork for her visit to Duke in June. I see my neuro on 15 June. We are waiting to see if my neuro talks about LEMS, Plex or referral to Duke or Wake Forest or Mayo.
Mike