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FrJn

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Good afternoon, all! Well, I’m now over a year in the diagnostic process and just yesterday (following gallons of blood work, MRI’s, EMG’s and NCV) I have received a “working” diagnosis of PLS from the head of an ALSA clinic He was very clear that this is a “working” diagnosis only to the extent that PLS frequently progresses to ALS. He stopped short of a diagnosis of ALS only due to insufficient clinical findings of LMN involvement. So, if anyone is wondering, that’s the reason for the date of diagnosis as well as the indication that I’m still going through the diagnostic process. Who knows what the future holds?

For a bit of background, I’m male and a Navy veteran now a civilian

I’ve been reading the posts in this forum since January of 2014, when my neurological condition could no longer be comfortably ignored. I began this diagnostic maze with several pre-existing conditions… 1. I can read… 2. I can comprehend what I read… 3. I’m not prone to health anxieties. Finding the sticky on the DIHALS sub-forum to be wonderfully informative, I made up my mind neither to register nor post here until after I had a diagnosis. The patience of so many members of this forum in interacting with DIHALS’ers has truly been amazing!

So, for over a year now, I've been reading, meditating on, and praying for, ever so many of you. Your needs, challenges, and victories have regularly been taken to His altar. I shall certainly continue those practices. Since my current diagnosis is PLS, I'll mostly confine myself to that sub-forum (at least to a point where my diagnosis may be changed). If ever you should need me for anything, please do feel entirely free to pop on down there and drop me a note.

Mike, I was literally in tears when I read of how your daughter was treated so spitefully by members of a community. Please know that the Gospel which I know is one of love, support, and encouragement. You and your daughter regularly are in my prayers. If ever there’s any way in which I can serve to bring healing to you or your daughter, please do let me know. Now, on an entirely different vein, Mike, your picture looks like the cockpit of a T-6 or a DHC-1. Am I anywhere near to being close?



John
 
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MaxEidswick

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>Ive witnessed Max on several occasions cavorting about the forums and declaring Go Blue!

well now that we have a coaching staff ... :)

sorry to hear of your diagnosis :-(

ps I was usn '70-'74, Hector & JPJ
 

Nikki J

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Welcome. And sorry. Will pray PLS remains the diagnosis. You do know that some of our PLS vet members have successfully received VA benefits on the premise that PLS and ALS are on the same continuum?

Nice to meet you and thank you for your prayers for our community
 

FrJn

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PALS
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Nikki, you are indeed a blessing to this place! I can't begin to tell you how often I have joined you in prayers, and particularly for those with health anxieties whom you've so lovingly tried to help.

I did do a bit of a search of VA benefits and did indeed find that some areas grant service-connected disabilities for PLS. However, until I have a firm "take it to the bank" diagnosis of one MND or the other, I think I'll hold off on applying.



Thanks for the welcome and I "promise" to behave (except for my somewhat quirky sense of humor which occasionally bubbles to the surface).... :)

John
 
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FrJn

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PALS
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Small Town
Max, God bless you! If ever I make it south, I'll need to arrange to meet you for a cold one and a bit of lovin' from an Irish Setter! 'Tis always great to finally greet another former squid!

John
 

Jeanau

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Joined
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Messages
336
Reason
PALS
Diagnosis
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Country
US
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Pittsburgh
GO PITT!...I couldn't resist. Welcome to the forum. I'm recently diagnosed and just had my first ALS Clinic this morning. I'm blessed to have such great medical facilities close by. My faith is strong and I lean on Him daily. I'm doing my best to live in the now and do all I can do while I can still do it. I know that the reality of this disease is a series of losses, so I'm grateful for all that I'm still able to do. Once again...GO PITT!
 

swalker

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Joined
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Reason
DX MND
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CO
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Welcome aboard. Sorry to hear of your "working diagnosis", and will hope and pray is stays PLS (or better:)).

Steve
 

Clearwater AL

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Messages
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12/2016
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Well... welcome aboard the slow "working diagnosis" train called the "PLS.' It may take a few more years (according to Criteria) to get a confirmed diagnosis (diagnostic code) to apply for VA Benefits.

Will be looking forward to your comments in the PLS sub-Forum. Just don't try and "save" me. I'm a lost cause. :)
 

cheerleader

Senior member
Joined
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Messages
977
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Lost a loved one
Diagnosis
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US
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Al, lost causes are some of our favorite people for their honesty, humor and alternative analysis of things! No hope of saving you,but we surely can enjoy you!
John, sorry to welcome you! At least you are on the slow train!
 

FrJn

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Joined
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04/2016
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Guder mariye, all y'all! ... :) (Which is, of course, PA Deitsch for "Good morning")

Juneau, I so wish that the Pitt/Penn State and West Virginia/Penn State games were back on the schedule! They were always the best of the season! Thanks for the welcome!

Steve, good morning to you, too! I was so sorry to have recently (at least it seems like recently) have heard of your diagnosis!

ClearwaterAL, fear not, please! I'm by no means a "Thumper"... :) I truly do love ALL of His Kids! No proselytizing from me, I assure you. On the other hand, if ever you have any questions, please let me know. I'll do my best to answer anything! Beyond that, I find great comfort in just knowing that we're here for one another.

cheerleader, thanks ever so much for the welcome! I truly do pray that this stays as PLS. Actually, I had hoped that something was found in the second cervical MRI which would have explained the lack of temporal recruitment on the EMG. Alas, another clean one. In the grand scheme of things, however, I'll opt for PLS rather than ALS! Not that I want either, but, so long as I have to have one or the other...

Have a great one, folks! I'm off to a training session shortly and then back to the parish for a Saturday evening Eucharist.

John
 

anderkling

Distinguished member
Joined
Dec 1, 2014
Messages
270
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
City
Surrey
Fr. John, I find your posts quite refreshing. You have a pastor's heart! Thank you for sharing all you did. Welcome to the forum. Along with the rest, I too hope your diagnosis remains PLS. Let us pray for one another.
- Charlene
 

Clearwater AL

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I hope for John that being just one year into the diagnostic process for PLS which according to Pringle et al is 3 to 5 years of exclusion and observation... he still has a chance that it might not even be PLS. A "Working Diagnosis" is just that. Let's all hope the better for him unless it's confirmed and then it's still not ALS. Not all (or most) cases of PLS become ALS.
 

FrJn

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PALS
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Charlene, thanks ever so much for your welcome! Praying together brings great comfort and peace to me, so it's what I do... :-?

Clearwater, following my EMG in October, the only two differentials remaining on the table were ALS and PLS. At that time, my neurologist indicated that he didn't believe my malady to be PLS. That changed in March, when he made that "working diagnosis". I truly do feel like I've "won the lottery" (of course, to actually do that, I'd need to buy a ticket... :) )

Have a great one, folks, and know that we are continually covered. Just being able to share with those who truly understand is a wonderful thing.

John
 

Clearwater AL

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Ok, the EMG (the Gold Standard Test for ALS) indicated you do not have ALS, being that you feel like you won the Lottery, and being that EMGs do not test UMNs your symptoms left him/her with a "working diagnosis." that could be PLS but not a written diagnosis.

It's like if someone posts here on the Newly Diagnosed sub-Forum saying they have been diagnosed with ALS, a rare terminal disease and then later in their post they write their doctor says it's a working diagnosis. Like many ALS members have told questioners, "It's not ALS until it's ALS."

For one of faith... don't give up on hope so quickly. PLS is rarer than ALS and the most difficult to diagnose. Good Luck.
 

FrJn

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PALS
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Clearwater, thanks ever so much for the reality check.. and I do say that sincerely. Things are really very new to me yet and, like many folks, I'm wending my way through a veritable plethora (for some reason that old descriptor has stuck with me through the decades) of emotions.

That trite comment about winning the lottery was me, less than gently, kicking myself in the getoosh and reminding myself of exactly what you stated. It's not until "it is". This also reminds me to proofread things far more carefully before hitting "post"... :)

Have a great one, y'all! I'm in just a bit early this morning, so that I can get some work done prior to our receiving our "onion snow". Hopefully there's not too much of that "frozen liquid sunshine" so that shovelling is not necessary.

Pax

John
 
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