TippiLeigh
Active member
- Joined
- Jun 13, 2020
- Messages
- 96
- Reason
- DX UMND/PLS
- Diagnosis
- 07/2020
- Country
- US
- State
- CA
- City
- XXXX
So quick back story/synopsis:
1. Local general neurologist I first saw: Very confident it's PLS
2. UCSF neuromuscular neurologist: Very confident I had ALS, until clean EMG, then wanted to do a wait and see approach
3. Stanford neuromuscular neurologist: Strongly feels it's PLS, but still not convinced this isn't going to progress to ALS in the near future
So, I recently had another appointment with UCSF & I wasn't content with with the "wait and see" approach and wanted to continue to do testing for potential other conditions so she ordered a paraneoplastic antibody test. (I think it was mostly to just throw me a bone because she said she didn't expect to get anything from that test.) Well, it came back positive for the AChR Ganglionic Neuronal Ab, S antibody. I had a brief moment of thinking, "Wow! Maybe this isn't MND after all and maybe I have something that actually has a treatment!" That excitement didn't last long after they explained that that particular antibody has nothing to do with MND and my results were so low, that treatment for that antibody would probably do more harm than good. They think that antibody could possibly be contributing to my weightloss and gastroparesis, BUT, now they are more worried that I may have cancer too because apparently people that are positive for that antibody have a high percentage of also having cancer. My brother, nephew, paternal grandfather, maternal grandmother, and several cousins have all died from cancer, so I'm also at a greater risk for that.
So, they still think I have MND (most likely still PLS, but not yet ruling out ALS) and....now I've learned that I could also have cancer or at the very least, I also have an autoimmune disease on top of MND. Yay me! They're working with my insurance as I type this to get approval for a PET scan from neck to pelvis and for additional cancer screenings. I guess that's what I get for pushing for more tests If I can't laugh about this crap, I'll cry....
1. Local general neurologist I first saw: Very confident it's PLS
2. UCSF neuromuscular neurologist: Very confident I had ALS, until clean EMG, then wanted to do a wait and see approach
3. Stanford neuromuscular neurologist: Strongly feels it's PLS, but still not convinced this isn't going to progress to ALS in the near future
So, I recently had another appointment with UCSF & I wasn't content with with the "wait and see" approach and wanted to continue to do testing for potential other conditions so she ordered a paraneoplastic antibody test. (I think it was mostly to just throw me a bone because she said she didn't expect to get anything from that test.) Well, it came back positive for the AChR Ganglionic Neuronal Ab, S antibody. I had a brief moment of thinking, "Wow! Maybe this isn't MND after all and maybe I have something that actually has a treatment!" That excitement didn't last long after they explained that that particular antibody has nothing to do with MND and my results were so low, that treatment for that antibody would probably do more harm than good. They think that antibody could possibly be contributing to my weightloss and gastroparesis, BUT, now they are more worried that I may have cancer too because apparently people that are positive for that antibody have a high percentage of also having cancer. My brother, nephew, paternal grandfather, maternal grandmother, and several cousins have all died from cancer, so I'm also at a greater risk for that.
So, they still think I have MND (most likely still PLS, but not yet ruling out ALS) and....now I've learned that I could also have cancer or at the very least, I also have an autoimmune disease on top of MND. Yay me! They're working with my insurance as I type this to get approval for a PET scan from neck to pelvis and for additional cancer screenings. I guess that's what I get for pushing for more tests If I can't laugh about this crap, I'll cry....