Military veterans.

[Zaphoon]

Pls Is A Monster!

How in the world could an MD refer to PLS as a benign form of ALS. Shucks, there isn't anything "benign" about it! Statistics in a whole lot of places state that 50% of those with PLS see it morf into ALS. What is benign about that!

I'm one of those folks in limbo as far as diagnosis and ALS, at this point after 2 normal EMG's, is not what is causing my problems. Great news for me! I'm hoping and praying that all of this UMN stuff isn't being caused by PLS. As often as it becomes ALS within 3-5 years (or sooner), you're left on the high end of the teeter-totter for all that time.

I hope I haven't offended any of you with PLS, on the contrary, I really feel for you. Talk about an orphan disease! Woooh!

I'm still thinking I have a myopathy, neuropathy or misplaced kidney stone.

Zaphoon

 

[Walter]

The Geneva Study - PLS

Just general information.
I download a PDF article called "Genes and Environmental Exposures in Veterans with Amyotrophic Lateral Sclerosis: The GENEVA Study"
It stated there were 2089 enrolled in the study. 127 (6.1%) had PLS.
It also stated how the individuals in the study were grouped.
Definite ALS, Probable ALS, Possible ALS and Suspected ALS. The "Suspected ALS" including progressive muscular atrophy, progressive bulbar palsy and primary lateral sclerosis.

 

[TxRR]

I was diagnosed by two of the best doctors in the Houston Medical Center area. Dr. Stanley Appel is a world renowed leading expert in ALS. Dr. Appel and his team told me personally to my face that I had PLS and it would NEVER be ALS.

I'm not a doctor but in my opinion those that get diagnosed with PLS that later turns into ALS were either not diagnosed properly to begin with or the disease had not progressed far enough to be evident. My primary doctor said he only see's about 7 cases of PLS a year. He referred me to Dr. Appel, his mentor, for a second opion. Dr. Appel, on average, see's 7 cases of PLS a week therefore, it's easy to see how a bad diagnosis could be made. Again, this is just my opinion.

 

[TxRR]

I would also like to add that I have UMN with some LMN involvment. By definition, I should have ALS. My doctors, for whatever reason's I can't explain, still say i have PLS.

Zaphoon,
Just out of couriosity....isn't a misplaced kidney stone a far stretch from ALS/PLS?

 

[Zaphoon]

TxRR,

I'll stretch however far I must to color whatever I have something other than PLS.

It would be great if it is true that PLS never develops into ALS. This looks to me like one of these areas where some neurologist have a disagreement. From what I've read, there is a large percentage of PLS cases that develop into ALS within 3-5 years or sooner. If there is a misdiagnosis going on for such a great percentage (50), there's something other than pudding in the mix.

I'm seeing progressive weakness in my arms and legs along with twitching, cramping and blah, blah, blah. Wouldn't you like to believe your symptoms were due to something other than PLS, even if it means its just a misplaced kidney stone? You can't believe I actually think that's what might be causing my troubles. Come on...

Zaphoon

 

[TxRR]

Zaphoon, I know where your coming from. My family and I were in deep denial when I was first diagnosed. We thought for sure it had to be a mistake. Over time, we came to terms with the disease and have accepted it. I plan my life alot differently now but i'm not afraid to live life and have fun.

I was diagnosed in 1/2007 but my symptoms actually started in 2002. I guess you could say i'm past the 3-5 year mark. I consider myself lucky to have had such great doctors that took the time and effort to properly diagnose me.

 

[Zaphoon]

TxRR,

Thanks for understanding. I appreciate your remark about the docs taking their time to properly diagnosed you. This is no funny business, for sure. I read one statistic that put PLS like 1 in 10 million and other postings that said there wasn't enough data on PLS diagnosis to remark.

I believe those doing the diagnosed'ing have the patient's best interest at heart and want to be very thorough and correct the first time. Looking at your wait time, mine has been nothing! Your posting has been an encouragement!

Thanks!

Zaphoon

 

[TxRR]

I read the same statistic of 1 in 10 million. I started playing the lottery figuring if I developed PLS at those odds then maybe the lottery is next. I've also read that PLS is more common but people with the disease just haven't identified it. I guess it's because the symptoms are so gradual and the diagnosis is so difficult. I didn't even know I had it until people started telling me that I was walking funny. Theres no telling how long ago the disease had manifested before this point.

One of the first neuro's that I visited said there was nothing wrong with me and that some people naturally had brisk reflexes. I refused to accept that and went to the two neuro's (Dr. Popeney and Dr. Appel) that I have now. They immediatly recognized something was wrong and began a battery of tests. Within about 30 days Dr. Popeney diagnosed me with PLS. He also referred me to his mentor for a second opinion just to be absolutley sure. This was very suprising because most doctors are egotistical and don't like being second guessed. My doctor put his ego aside for my well being and I think that was very honorable.

On the bright side, they are doing remarkable things with stem cells and I think we'll have a cure or atleast a good treatment in the near future. Hell, I never thought they would come up with Lasik surgery for vision correctness.

 

[Walter]

PLS - Left Out

I found this on the FAQ’s: New Veteran’s Administration Policy for ALS page of the ALS Assoc. web site Dated Oct 1, 2008.

13. I have been diagnosed as having Primary Lateral Sclerosis (PLS). Will I automatically qualify for VA benefits under the new policy for ALS?

No. The presumption was established for ALS only and does not apply to a diagnosis of PLS. However any disease or condition can be rated as service connected if it is shown to be caused or aggravated by military service. You still may apply for benefits, but PLS is not presumed to be service connected.

 

[TxRR]

Well, I'm not suprised. I called the ALS Assoc. back in Sept. and asked them that question. They didn't know at the time but it looks like they found out.

I don't see how the VA expects people with these kind of disease's to prove it's service releated or maybe that's what they're counting on? The only thing they now about ALS is there's a larger incidence in military verterans vs civilians. They don't know the exact cause but believe it may be related to chemical exposure, enviromental, over training or immunizations. Well, I was exposed to all those things as an 0311 Rifleman and I have an even more rare disease. There is no history of the disease in my family. I didn't have it going in but I have it now. What more proof do they need?

By the way, I received a letter from the VA last week saying they can't locate my service medical records. Looks like i'm in for the long haul.

 

[Walter]

Secretary of Veterans Affairs

PLS is such a rare disease. There are only a few number of individuals afflicted with PLS and even smaller small number of veterans.

Possibly because we are small in number and don’t have large organizations, famous or prominent people like military generals advocating for us, we may have been ignored or just overlooked by the VA as far as the presumptive directive is concerned. (Who knows?)

So, I wrote a directly to Secretary Peake.

I pointed out since PLS is a specific form of ALS and many authorities consider PLS to be a sub-category or a rare type of ALS.

I asked him to acknowledge that PLS is a particular type of ALS and to please categorized PLS as a presumptive illness along with the classical form of ALS.

I attached several quotes from those authorities.
Such as: The Johns Hopkins Medicine Neurology and Neurosurgery website
“Primary Lateral Sclerosis (PLS) - a progressive neurological disease in which the upper motor neurons (nerve cells) deteriorate. If the lower motor neurons are not affected within two years, the disease usually remains a pure upper motor neuron disease. This is the rarest form of ALS.”

Here is Secretary Peake’s address in case anyone wants to write. I figure it couldn’t hurt.


To: The Honorable James B. Peake M.D.
Secretary of Veterans Affairs
810 Vermont Avenue NW
Washington, DC 20420

 

[CindyM]

It never hurts to write, Walter. Sometimes just a few letters are enough to cause a look into the existing policy and a review of what else needs to be done. remember the old saying about the squeaky wheel!
Cindy

 

[Walter]

Letters

Cindy, you are so right. A few letters might get someone's attention. I hope some of the veterans with PLS write the secretary or anyone that they think has any influence. TxRR made a very good point with his statement..."PLS may not be life threatening but it is debilitating and that's what VA "disability" benefits are for. They do not call them VA "life threatening" benefits."

 

[bpayton]

Alsa

This is my first post but have been reading forum for over a year.I was diagnosed of PLS in Apr 2006.I contacted ALSA of GA and they are trying to get me info showing PLS is a form of ALS and should be covered under the persumptive ruling but you never know with the VA.
Thanks Billy
PLS-2006

 

[BethU]

Billy, welcome to the forum. Glad you found us.

I hope you get that ruling. ALSA is the best! They will fight for you all the way.