Thought I had something else...I do, but also still have MND (just venting)

Status
Not open for further replies.

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
84
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....
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Oh, no, what a rollercoaster. And after all that your family has been through. I’m so sorry you received this bizarre curveball. Virtual hug to you.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,147
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Did they do a lumbar puncture? If not ask them why?
 

morleyde

Active member
Joined
Apr 4, 2018
Messages
37
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
Tippi,

Why was UCSF very confident it was ALS, and Standford thinks it may progress to ALS?
Do you have any LMN symptoms? If it has been 3-4 years since symptoms, with a clean EMG, and no LMN, they usually diagnose PLS.
I realize it is a judgement call with various opinions on when they can say definitive PLS, and that most PLS diagnoses are just the early stages of ALS.

Just my opinion, based on my experience and knowledge. Hope this helps.
 

nona

Senior member
Forum Supporter
Joined
Oct 1, 2018
Messages
525
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
New London
Grrr, how frustrating!
 

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
84
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
@IslandL8dy It’s definitely been a roller coaster, but I’m not unique. Unfortunately, as you will see here all too often, neurological stuff takes sooooooooo long to get diagnosed correctly. I feel so bad for everyone going through this stuff. And I feel like I’m one of the lucky ones because so far it’s been mostly all upper motor neuron issues so even if this does progress to full blown ALS, I’m UMN dominant, which has a slower progression usually.

@KimT I’ve had a lumbar puncture and it was completely normal. One of my many “normal” tests LOL! And we wonder why neurological issues take so long to diagnose LOL.

@morleyde my first appointment with UCSF I did not have an EMG. She thought ALS because in addition to all the UMN symptoms, I also had extreme weight loss (about 30 lbs), a little atrophy, and some twitching. But now we’re thinking those weren’t true LMN symptoms, but instead related to the antibody I tested positive for. (Well, at least the weight loss portion and the atrophy is from the weight loss) Just kind of a fluke and coincidence. Once I had the clean EMG though, UCSF said no ALS, we’ll just keep monitoring for PLS.

@nona thank you! Yes, so so frustrating!
 

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
84
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
There is some disagreement between all three neurologist as far as timeline. It’s been a little over a year since I REALLY knew something was wrong, but you can go back about 3 to 4 years in my medical history to see some of the early issues I had. I tripped and fell, injuring myself a couple of times. Things like that. But I always chalked all that up to “getting older” and “being clumsy”. So, I’ll probably just have to sit in limbo-land for a while. It’s still frustrating, but as time passes acceptance starts to set in and all I can do is just concentrate on symptom management and living life. I have two adult children out of the house, but I have a high schooler at home and a 1st grader. That 1st grader keeps me going whether I want to or not LOL!
 
Status
Not open for further replies.
Top