Lambert Eaton Myasthenic Syndrome?

[dbltree]

After me second neuro visit (2nd DR/opinion) he ordered extensive blood work to check for literally any and all possibles other then ALS, barring anything new he concurred that I have ALS.

The blood work was done at Mayo and my neuro at University of Iowa ALS Clinic called after my visit to say that P/Q type voltage-gated calcium-channel (VGCC) antibodies were elevated in the Paraneoplastic panel.

The report says this is consistent with Lambert Eaton Myasthenic Syndrome which is associated 60% of time with cancer, so now I have to go for CT scans from neck to pelvis.

Just curious if anyone has heard of this? LEMS causes ALS like symptoms but they say the first thing is to search for tumors.

I just accepted the fact that I have ALS and now...this?

Anyone ever deal with LEMS or been told the P/Q was elevated? Very rare disease....

 

[kiara]

I know that this syndrome is often caused by lung cancer but there are also cases where there aren't any tumors and it's a sort of autoimmune disease. Let's hope in your case there are no tumors but anyway everything in my opinion is better than als. At least there are medicines and the opportunity of being cured. Let us know how are you doing! good luck

 

[island]

I know Jannie_M, member of this forum was found to have Paraneoplastic syndrome, but I don't know if it was LEMS.
Hope it is not ALS, but something treatable
Wish you all the best
Hronn

 

[dbltree]

Thanks for the replies...not sure what to think at this point? I know my right hand is weak, swollen and stiff and arm is weak with muscle pain. I can still walk on tip toes yet right leg is weak but all of that could fit any number of neuro diseases.

Until now I thought they had it all figured out but now...don't know what to think?

 

[Nighthawk]

dbltree,

I do hope what you have is something that can be treated and your overall health can improve.
Fingers crossed.

NH

 

[notme]

Left you a visitor message--please look at it

 

[dbltree]

I did, thanks!;-)