dbltree
Distinguished member
- Joined
- Jan 3, 2013
- Messages
- 217
- Reason
- PALS
- Diagnosis
- 01/2013
- Country
- US
- State
- Iowa
- City
- Birmingham
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....
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....