Just wondering... again. :-)

[Clearwater AL]

Just wondering... again. I don't know. Has anyone been misdiagnosed with ALS for two years (or more) then their diagnosis was changed to PLS? There's a lady on the PLS Forum who might be just a little misled... I think.

As per her new Thread "New Member"...("I was recently diagnosed with PLS--after being wrongfully diagnosed almost 2 years ago with ALS.") ?

 

[MaxEidswick]

> Has anyone been misdiagnosed with ALS for two years

I would consider that malpractice!

 

[Clearwater AL]

Max, that word crossed my mind too. What if she had (or has) filed for Social Security Disability, got fast tracked on Medicare and or made accordingly any financial/insurance arrangements only to learn 2 years later she does not have ALS?

I hope anyone would understand that a neurologist isn't going to guess (apparently like hers did) on a diagnosis of ALS. The EMG is a "Gold Standard" test for determining ALS. If one was done... that word would really apply.

 

[sadiemae]

I do know of a member here. John1. His was changed to UMN ALS, which is basically PLS

 

[sadiemae]

ALS/MND Support Group Forums - View Profile: John1

 

[sadiemae]

https://www.alsforums.com/forum/general-discussion-about-als-mnd/17450-change-diagnosis.html

 

[MaxEidswick]

>Max, that word crossed my mind too. What if she had (or has) filed for

orworse yet, we had to reimburse the VA !

 

[Clearwater AL]

Hey Sadiemae, that's interesting... I guess with MNDs anything is possible. I was wondering because I have read (to say) Social Security, Medicare and Medicaid within the past few years have grown a set of sharp claws. Meaning, if someone has been diagnosed with a disease which entitles them to benefits and later found out to be misdiagnosed, they want any benefits granted ($$) back... from the doctor or the patient. If a person does have a change of diagnosis and doesn't notify the above... that person (or the doctor) could face charges of fraud. It's complicated. I'd guess the doctor would have to have some pretty sound evidence how the misdiagnosis was made being that EMGs are used to indicate LMNs only. (I think...). So, it is possible.

PS. I read several of John1's posts and threads. I read his symptoms began in 1994! Wow!

 

[lgelb]

The SSA listing references several 335.x codes, i.e. anterior horn disease, which would include PLS.

 

[Clearwater AL]

Igelb, are there a differences of benefits (SSA and etc) concerning a fatal disease versus a non fatal disease? I think there are concerning Veteran's Benefits.

I've read in previous Threads where members (PALS/CALS) encouraged those being diagnosed with PLS to ask/encourage their doctors to write it as ALS because of the benefits and help available over a PLS diagnosis.

Anyway, ALS is rare and the rarest of rare would be having a confirmed diagnosis of ALS later changed to a diagnosis of PLS.

 

[sadiemae]

My husband was granted VA Benefits, then had them taken away, as hus Active Duty was determined to be for training. He was Army National Guard, and also worked full time for them, wearing an Army uniform every day for 6 years. It was the VA's mistake, and we didn't have to pay anything back.

 

[Clearwater AL]

Sadiemae, I have often wondered if the VA would be a lot different if they had to pay for their mistakes... (benefits granted can not be withdrawn.) But... it's the bureaucrats (government employees) who work there and with any tenure they can't be fired and nearly none are ever reprimanded for their lazy assed attempt to doing their job. The VA has become the governments dumping ground for Affirmative Action and it's smothered with people who are not qualified to do the jobs they have been 'given'. I'd bet not one of them is the least bit concerned (afraid) of the recent focus being put on the VA. They know they can't be fired... so who cares (them) if they have 3, 4, 8, or 10 reprimands in their file.
Ain't gonna effect their benefits or retirement package. And... certain ones would dare the government to try and fire them.

I am so glad the VA waived the return of any benefits your husband received. I sure would have thought of an appeal though. But, that's just another messy, tangled, lengthy process they have incorporated hoping the veteran will die or just give up on before they have to put themselves out to hear it.

I am sorry both of you had to go through their overwhelming incompetency.

 

[sadiemae]

We did appeal, but they were right. It sure hurt losing that check every month. We lost everything. In retrospect, it would have been better if we never received them to begin with. My husband died a very broken and bitter man because of it

 

[Clearwater AL]

Oh Sadiemae, my heart goes out to you. I've been dealing with the VA for 25 years. I've even been to a hearing in Washington DC. Lost records, lost support of claims mailed to them (they will no longer accept any mail they have to sign for... cowards!) and after they lost 2 items I sent to them... I had my local Congressional Office mail them from their office AND... they claimed they never received that either! My congressman's aide went off on them. I'd bet it didn't phase them a bit though.

Sadly, the DAV Office for my region has an office in the same building as the Veterans Administration. Their relationship is too close... literally. This DAV office only knows one thing for sure... where the next convention is (they have about 4 a year) and what hotel they'll be staying in.

I hope someone hears/reads of your story and tells your story in the media... if you wish.

Again, I am so sorry for you. You've lost so much. Take care.

PS. A civilian law firm won the claim I filed for.

 

[Graybeard]

Sorry to see your dim view of VA, Clearwater. The Long Beach VA is the best place with the best people. They have done so much for me. I couldn't ask for more. . It's far better than UC Irvine, who didn't even ask if I were a veteran. UCI ALS/MD center took ten days off after Christmas, and didn't tell the patients. You just couldn't get them on the phone.

Sorry about your losses, Sadiemae. The rules just can't cover every situation.

GB