Status
Not open for further replies.

Blondrea

Active member
Joined
Oct 27, 2014
Messages
88
Reason
CALS
Country
US
State
CA
City
Sherman Oaks
Hello. My partner was diagnosed about three weeks ago. He went to Social Security to inquire about disability (for the future, not yet). They told him that benefits will cease if it turns out to be a misdiagnosis, which is sometimes the case. I doubt they see many people diagnosed with ALS. Yet, according to them, some have been misdiagnosed.

Do any of you lovely people know of instances of this? I want so very much to have some hope. A little smidgen would be a godsend.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It happens. If your diagnosis was from a neuromuscular specialist it is rare. Someone quoted a statistic of 10 percent but I think that must include those diagnosed by non specialist neuros or even by non neurologists. We have had people here who claimed diagnosis only to have it overturned by the neuromuscular specialist. Much more rarely there have been people who seemed to have their diagnosis changed after seeing the specialist neuro for a time. At least one of these that I remember though had it changed back to ALS
Then you will find the people who claim their ALS is really Lyme. Frankly I believe the majority of those people are being taken advantage of
 

Blondrea

Active member
Joined
Oct 27, 2014
Messages
88
Reason
CALS
Country
US
State
CA
City
Sherman Oaks
Thanks, Nikki. Unfortunately, my partner was diagnosed by a doctor who heads the ALS research lab at UCLA. She's cold, disorganized and seems completely uncaring. But, I guess I can't question her neuromuscular knowledge.

Thanks for being so helpful. You are a treasure.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Sorry. Of course everyone is wrong occasionally but an ALS diagnosis is not given lightly. Did you say you are going for a second opinion? I can't remember
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,190
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Social Security ... told him that benefits will cease if it turns out to be a misdiagnosis, which is sometimes the case.

Typically, SS will take the time to investigate if you are disabled. However, in the case of ALS, they speed up the process, accept your claim, and do the investigation later. So they need to caution you that benefits will cease if it turns out to be a misdiagnosis. This is part of the SS routine.
 

anderkling

Distinguished member
Joined
Dec 1, 2014
Messages
270
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
City
Surrey
I personally know two people who were misdiagnosed by neurologists. As the disease progresses to later stages, it becomes very clear whether it's ALS or not.
- Charlene
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,691
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Charlene are you saying you know two people who were diagnosed ALS and it wasn't? Were they diagnosed by an ALS Specialist Neurologist?
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,816
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Like Atsugi said, Social Security will follow up. They have ALS/MND specialist available to review your claim and they can actually schedule you to see an ALS/MND specialist if they doubt the diagnosis. And... they can set up a phone interview with the Neurologist who wrote the diagnosis. Another reason for a second opinion and most important... by an ALS/MND specialist.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>Another reason for a second opinion and most important... by an ALS/MND specialist.

Ditto that!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Were those 2 people misdiagnosed by the same clinician? What is their diagnosis now? And were they rediagnosed by a mainstream neuromuscular doctor? I ask because I know a couple of people rediagnosed with lyme by "lyme literate mDs" who did not respond to treatment and are now dead. The lyme drs say they got treated too late. I say really?
The real rediagnoses seem to be to MMN, CIDP PLS that sort of thing
 
Last edited:

anderkling

Distinguished member
Joined
Dec 1, 2014
Messages
270
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
City
Surrey
One was diagnosed by a neuromuscular neurologist. After almost 8 years, she is being re-classified as MMN. The other was diagnosed by a different clinician in a different city, and he went into spontaneous remission, which is extremely rare.
- Charlene
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The person in remission should contact Dr Bedlack at alsreversals.com. He is studying the phenomenon which as you say is very very rare but does happen and is not a misdiagnosis if he is one of the rare fortunate ones
 
Last edited:

Blondrea

Active member
Joined
Oct 27, 2014
Messages
88
Reason
CALS
Country
US
State
CA
City
Sherman Oaks
Thanks, everyone. Nikki, about that second opinion. We had one scheduled for next week, but we postponed it. It was with a colleague of our current doctor at UCLA. We have met this guy, and we don't particularly like his (our our doctor's) bedside manner. And, we think he will be very inclined to agree with his colleague (our current ALS doctor). So, we're trying to get a second opinion at Cedars-Sinai instead. At the very least, we're looking for a doctor who a seems to be in our corner.
Andrea
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I think that is wise. some places won't do second opinions for their immediate colleagues. Good luck
 
Status
Not open for further replies.
Top