EMG rules out PLS?

Status
Not open for further replies.

Artista

Member
Joined
May 30, 2018
Messages
29
Reason
Loved one DX
Diagnosis
06/2019
Country
US
State
CA
City
Fremont
It's been awhile. My dad finally saw a neuromuscular specialist at the ALS clinic in Irvine, director at UCI so top one, 3.5 + years in. He reviewed emg and mri and concluded no neuromuscular disease. Emg ruled it out. Brother has documented everything since 2017. He's had 70 falls. Doc says that's what's causing his left side symptoms. Right side minimally affected so his right arm and leg are fine. Saw neurosurgeon today and unfortunately nothing fixable with surgery. Also said not neuromuscular disease. Up next is visit with spinal rehab specialist. I'm getting conflicting info about emg. It diagnoses ALS but what about PLS.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,225
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi Artista-

I've moved your thread to the correct subforum. I'm also linking your previous threads here so folk can see what has been discussed in your dad's (and your) long journey to diagnosis. Is it correct that ALS/PLS (motor neuron disease) has been completely ruled out and your dad's neuro has stated it's a spinal issue?



 

Artista

Member
Joined
May 30, 2018
Messages
29
Reason
Loved one DX
Diagnosis
06/2019
Country
US
State
CA
City
Fremont
Thanks shiftkicker. I don't go to the appts as I'm 500 miles away. I just know what my bro says. If I bring it up it's shot down and my dad and bro take a depression dive so no point. I assume the neuromuscular specialist who's top at UCI in the ALS clinic would know about PLS. I don't know.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Yes, they know about PLS at UCI, though "standard" EMGs will not see it. I presume from the mention of MRI that stroke(s)/clots/bleeds/tumors have also been ruled out and would also expect that someone would have screened for Parkinson's and related disorders. Perhaps you can check his medical record via the UCI portal and see the notes relative to any differential diagnoses that they are still considering.
 

Artista

Member
Joined
May 30, 2018
Messages
29
Reason
Loved one DX
Diagnosis
06/2019
Country
US
State
CA
City
Fremont
I'll see if bro will oblige. I'm not on the release of info. Dad saw Dr. Mozaffar if anyone knows him at UCI.
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
We saw Dr. Mozaffar in February 2020. My husband has bulbar onset PLS, with a clean EMG (after 2 years of symptoms at that point). But Mozaffar still told him he has ALS because he "doesn't believe in PLS and it is all an ALS spectrum". But he didn't hesitate at all about staying it was ALS even with the clean EMG at this point (which is not what our other neuromuscular doctors have said). So I'm not sure what to tell you! Maybe the bulbar symptoms don't have other possible causes so he was ready to call it MND for my husband, but maybe since there are other possible spinal issues he isn't willing to make that diagnosis for your dad.
 

Artista

Member
Joined
May 30, 2018
Messages
29
Reason
Loved one DX
Diagnosis
06/2019
Country
US
State
CA
City
Fremont
Why doesn't he believe in PLS? I mean ALS kills you. So what does he call someone who's like years in? ALS? Doesn't make sense.

Unfortunately my brother feels dad saw the top doc there so they are done. Spine rehab specialist is next.

I myself am not sure what an official diagnosis would do at this point for something that has no treatments, cures, remission. He did tell dad if nothing is done his condition will worsen. He thinks the 70 falls have caused this, not mnd. I mean as things come up then you seek symptom control, right? They are both close to major breakdowns which is why I'm not mentioning pls. So difficult and heartbreaking. Hoyer lift being delivered soon for caregiver to use. :(
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm glad he's getting a Hoyer. How does he get around? Not falling any more would be a priority whatever the diagnosis.

ALS doesn't kill everyone at the same rate. ~10% live a decade or more. PLS on the average goes slower but that isn't an absolute. The belief that PLS belongs on the ALS spectrum (the same thing happened with PMA, to a large extent) is not uncommon. And if he did have an MND diagnosis, there are some drugs he would be eligible for, though likely not as effective several years in. But if he doesn't have an MND, the point is moot.

I would certainly get a second opinion on anything spine-related, just as we say to do with MND. The notion that his falls are causing motor deficits begs the question of why he fell. Did he get his brain imaged?

Best,
Laurie
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
I agree that getting a PLS diagnosis doesn't really "help" since there aren't really any treatments other than for some specific symptoms (baclofen, etc). And certainly preventing any more falls seems like the most important issue in the short term.

I'm so sorry you and your family are going through this.
 

Artista

Member
Joined
May 30, 2018
Messages
29
Reason
Loved one DX
Diagnosis
06/2019
Country
US
State
CA
City
Fremont
He really doesn't get around much. He has a caregiver wed thru fri for 12 hours each day (he doesn't need help in the night) and my bro is there the rest. He does transfers. Caregiver does less and uses diapers until the hoyer comes.

He's had brain MRI's. Minor strokes but some neurologists said that could be it and others no, too long ago to be cause. Also he has full sensation in those limbs which rules out stroke.

In Jan 2017 he was walking, felt dizzy, fell and got up with a little limp. Eventually the arm on same side got affected. Bro says after every fall it got a little worse. Bro kept a diary of his plight and read it to Mozafar. He says each fall has damaged his spine that much more until it's pretty compressed to where his left side is useless. He's had a few opinions, nothing conclusive except this doc saying not mnd. I highly doubt they'll go to another doc after seeing the director of nmd. It's very hard to take dad out.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Not sure where you got that full sensation rules out stroke...post-stroke sensory disturbances are common but not universal, and often improve over time. It's splitting hairs, maybe, but the strokes could certainly have contributed to his disability one way or the other, as you say.

If there is actual spine damage/cord compression, there are other procedures and therapies besides surgery (if the latter has been ruled out; again, I would get a second opinion from a spine specialist) that might help. But I understand if your dad chooses otherwise. Still, your bro might want to consider a telehealth consult with a PT or OT around ways to help your dad.

He/you might also want to look in on the CareCure forums, where the focus is spinal cord injury.
 

Artista

Member
Joined
May 30, 2018
Messages
29
Reason
Loved one DX
Diagnosis
06/2019
Country
US
State
CA
City
Fremont
Dad's had a PT come to the home for almost 2 years. OT couldn't do much so earlier on that was stopped.

Bro texted this to me so spine rehab doc is it now. I hope Mozaffar is right but still he said with any movement the spine is affected and so it'll get worse if nothing is done.

"Mozaffar already closed us out last appt. He said conclusively it is not muscular disease and he cannot help us. He is certain it's damage to the spine and so was the surgeon. It is damage that can't be operated on. End of story. Both doctors closed it out. Mozaffar is the top dog in that dept. Nothing more to be said."

He's exhausted. He's 48 and has no life. Even when he can go to his own place, he still knows he's on call so no real rest. :((
 
Status
Not open for further replies.
Top