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Clearwater AL

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PALS
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Get Real
I think (my opinion) those who are dealing with all the signs of PLS but linger without a diagnosis need to hit their neurologists with point blank hard questions. Four or five appointments within a year and then the next year too with tests that indicate something is going on but the neuro still won't make the call just isn't right. If you have an appointment (that is maybe your 6th, 7th or 8th) and still no diagnosis and the neuro says at the end of the appointment, "Stay on the Baclofen and I'll see you again in three months." Bingo! There's the time for the point blank questions. Like (brutally honest), "What the hell difference will that make? I've seen you 7 times, nothing has improved, I've progressed, you increased my meds, my tests indicate something is going on and you're still shrugging your shoulders. With all due respect Dr. Whoever, what could three more months from now help you make up your mind? What don't you see in this appointment that makes you hesitant to make a diagnosis.? Tell me what's missing. Again, with all due respect Dr. Whoever I'm at a point I'd like some answers."

Remember, he's being paid to see you... by you! It's your money! Too many appointments I sat there and nodded my head with the attitude, "Well... he's the doctor." Go for it.
 

dalvin

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PALS
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US
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va
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richmond
Agreed, I had to be be blunt to get mine to be more active. I told him if his car was not running right and the mechanic did a test, shrugged his shouldersand said come back in X amount of time he'd be looking for another mechanic, I need answers
 

billbell52

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Feb 1, 2010
Messages
226
Reason
DX UMND/PLS
Diagnosis
05/2005
Country
US
State
TX
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Here is what I have discovered about getting a diagnosis. PLS is VERY rare. A regular neuro will likely never seen a case or maybe one case. You need a neuro that sees ALS patients on a regular basis. A clinic that has several neuros is better since they can jointly discuss your case. For ascending PLS (starts in legs) it takes roughly 4 years. About 90% of ascending ALS patients show LMN involvement after 4 years. Bulbar PLS is quicker since Bulbar ALS progresses quickly. PLS progression varies widely. Some patients can still use a walker after 15 years and some are confined to a wheelchair after a few. This further complicates a diagnosis. I went to 3 neuros before I was finally diagnosed at the MDA/ALS clinic. Even there they only have a handful of patients.
 

olly

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Jan 10, 2008
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2,732
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PALS
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uk
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uk
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uk
Billbell is correct.
May I add........until they develop a specific test or mri to help diagnose pls its just a case of a clinical diagnosis and as billbell said waiting the allotted time to make sure no lmn signs develop.
I tried pushing my neuro and it does not work....they do have to be careful even in suggesting a possible diagnosis.
If you have a neuro who is willing to discuss tests and symptoms you could squeeze a bit of info.......like ask..why have I got spasticity? why is my balance off? ect ect and they may mention something about umn's causing it.
 

IhavePLS

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277
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DX UMND/PLS
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12/2010
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US
State
Pennsylvania
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SW
I agree with all of you! I will only add that each of must take complete ownership of our illness, and never place it entirely in the hands of a neurologist who sees us for 15-20 minutes out of every 3 months! Even the very best of neurologists have not walked in our shoes (and we're glad they do not have to).

Mike
 

Clearwater AL

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PALS
Diagnosis
12/2016
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Get Real
billbell52, Yes, ALS is rare and PLS is a rare form of ALS. But, (my opinion) the numbers we hear, 5,000 a year diagnosed, 30,000 at any time living with ALS are old. I have found in too many articles and sites where it's 2002, 2004 or 2005 information. Ten year old info.
Yes, some newer sites or articles, 2009, 2010 give the same numbers that I believe were just copied and went with the previous editions. Remember, neurologists do not have to report ALS patients/numbers to anyone. More than one military web site has stories of the unexplainable number of Veterans being diagnosed with ALS/PLS over the general population (those who didn't serve). I don't think it's as rare as it has been reported. Baby Boomers are at the prime age now. Just 20 years ago Alzheimers was considered a rare disease. Not anymore. Too bad there hasn't been research recently to what the real numbers are now. I think they're much higher.
 
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wendya432

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Jul 10, 2013
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74
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Country
US
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mi
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Davison
Thanks for the kick in the pants guys. I'm going to make sure that we really communicate at my next appointment. I've been seeing this neuro since April, so almost a year. And I've just been letting him do his thing. Maybe I should bring someone with me next time to help me out.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
2,059
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PALS
Diagnosis
12/2016
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US
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NC
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Get Real
Wendy, just a suggestion... you being just under a year you might consider great diplomacy in your tact with your neuro. I've written about patience often so I have to add...my journey was 4.5 years and over 17 appointments. My first diagnosis 4 years ago was possible Chiari Malformation Syndrome, it wasn't, which I now wish it was because that is fixable. You've got a way to go but do ask the questions... nicely. :)
 

Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
Hello.. my husband went to numerous Dr's as his Neurologist at Wright Patterson AFB Fairborn Ohio, wanted a 2nd and 3rd opinion.. we went to one in Centerville, Ohio that.. (and I am not even kidding).. whatever poster was on the back of the door that day.. that's what he had...finally he got into a specialist in the University of Cincinnatti...who it took 1-1.5 years for diagnosis...my husband was diagnosed with ALS in 2009...my husbands Dr. on base is phenomenal.. after several discussions... the Dr. on base said that he shows less symptoms of PLS than ALS especially since the progress has been so slow compared to most ALS patients..and.. since my husband is retired AF.. he used the ALS diagnosis because it is 100% service connected and PLS isn't. The benefits are more for ALS than PLS...my husband is in a wheelchair and has been since the "official" diagnosis.. but after about a year between onset of symptoms and diagnosis. Just last summer, the VA sent him to Cleveland to the VA there to see a ALS/PLS specialist. He pretty much told us to go home, get his affairs in order and die! NO NO AND NO! Not acceptable...he can still eat on his own (he does have a G tube for meds).. granted.. he cant talk, he cant walk, I do the full bathroom duty stuff, and he pays the bills online. up in Cleveland that Dr said he should stay in bed to conserve his strength...the speech therapist wants me to puree his food and put thickener in his drinks. He can drink pop through a straw and he loves his Texas Roadhouse...I cut up his food and make it manageable for him...I'm sorry.. I am just rattling on and on...but to your question.. they have to rule out other things.. did you know that Lyme Disease causes the exact same things as ALS/PLS>? I didn't either.. make sure they do a test for that... chin up!
 

John1

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Feb 25, 2006
Messages
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Diagnosis
10/2000
Country
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NL
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Newfoundland
Rhonda, on your point of looking after your husband's toileting needs. I would strongly urge you to get a good toilet-top bidet like a Toto Jasmine. They cost a few bucks but they are wonderful. Your husband (or you) can clean up with the push of a button.
 

wendya432

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Learn about ALS
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mi
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Davison
Just to clarify, almost a year with this neuro. Saw another before. And before that 2 rheumatologists, and an endocrinologist. Along with multiple visits with my primary Dr. Its been at least 3 years since I started getting weak and stiff. I've had practically every test under the sun.

I'm not one to be rude to a Dr. But I think its time for him to start looking deeper and be open with me.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
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uk
You go for it girlfriend.....give him all barrels.
 

billbell52

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Joined
Feb 1, 2010
Messages
226
Reason
DX UMND/PLS
Diagnosis
05/2005
Country
US
State
TX
City
Garland
In my experience neuros are reluctant to give a diagnosis unless they are sure. This is especially the case when there is no cure for the disease. Maybe they fear getting sued for a wrong diagnosis. One neuro saw some muscles twitching in my legs during an EMG. He didn't say anything but I got the feeling from his tone that he assumed it was ALS. Immediately after that he referred me to a MDA/ALS clinic. Even at the clinic they looked at every disease possible before giving a PLS diagnosis (MG, Kennedy's etc). If your neuro seems stuck ask for a referral.
 

dalvin

Senior member
Joined
Sep 12, 2013
Messages
954
Reason
PALS
Country
US
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va
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richmond
I sometimes get the feeling that they expect the symptoms to go away be them selves. Sometimes have to push a little because without a diagnosis you can't get much help
 

Bad Balance

Senior member
Joined
Dec 10, 2010
Messages
814
Reason
PALS
Diagnosis
12/2010
Country
US
State
GA
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Atlanta
I agree....so frustrating
Although a PLS diagnosis may seem " elite, consider that an ALS is an automatic SSDI approval and simplifies getting your wheelchair.
Think about this prior to your Doc putting it into your file.
PLS can be problematic
 
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