Second Opinions

[Eric2266]

I was recently diagnosed with PLS late March of 2014. My neurologist has been very helpful in setting up a visit to the Mayo Clinic in a few weeks to confirm his diagnosis. From your experience what should my expectations be and should I accept it or go for a third opinion from, say the Packard Center at Johns Hopkins?

 

[MaxEidswick]

> My neurologist has been very helpful in setting up a visit to the Mayo Clinic in a few weeks to confirm his diagnosis. From your experience what should my expectations be and should I accept it or go for a third opinion from, say the Packard Center at Johns Hopkins?

See what Mayo says. Any doubts do the third. This isn't the time for doubt!

 

[Bad Balance]

I am surprised that a neurologist would make a PLS diagnosis.
By all means go to Mayo...

 

[billbell52]

The Mayo Clinic is very good. What you want to do is rule out diseases that may be treatable. There is no treatment for PLS or ALS. ALS can present as PLS during the first few years. Generally at 4-5 years ALS should present. I have Bulbar PLS (starts with speech). Bulbar ALS progresses quickly so they declared mine PLS after 2 years. I would be near death if it was ALS. I don't see any value in getting a third diagnosis.

 

[MaxEidswick]

> I would be near death if it was ALS. I don't see any value in getting a third diagnosis.

good attitude ...

 

[IhavePLS]

Hi Eric, Mayo is one of the three best neurology centers in the entire country. When I looked for "elite" neuro centers back in 2009 or so, top three were Mayo, Johns Hopkins, and Cleveland Clinic. I believe Mayo was ranked #1 at that time.

Mike

 

[Eric2266]

Why do you say that you're surprised? Just curious. This is so new to me I have no idea what to expect.

 

[Eric2266]

I started down this road a year ago at the Cleveland Clinic and was told I had fibromyalgia after numerous tests. After my condition worsened my current doctor was convinced I had MS until the MRI's were negative. I get the whole process of elimination thing, but I don't think I could stand another EMG or Spinal Tap. . .

 

[MaxEidswick]

>I get the whole process of elimination thing, but I don't think I could stand another EMG or Spinal Tap. . .

ditto that! the spinal tap took three tries! And I consider the RMG a form of enhanced interrogation :-(

 

[edwards5257]

>I get the whole process of elimination thing, but I don't think I could stand another EMG or Spinal Tap. . .

ditto that! the spinal tap took three tries! And I consider the RMG a form of enhanced interrogation :-(

Max, what's RMG?

 

[MaxEidswick]

>Max, what's RMG?

oops, one-handed typing :-( -- I meant the dreaded EMG ...

 

[edwards5257]

Ha! Understand and thanks!

 

[Dusty7]

"I consider the RMG a form of enhanced interrogation."

But on the good side, EMGs tell you so much... and pretty definitively.

 

[IhavePLS]

I am surprised that a neurologist would make a PLS diagnosis.
By all means go to Mayo...

Jerry, why are you surprised that a neurologist diagnosed PLS? Who would do so -- if not a neurologist? Sorry, I wasn't clear...

Eric, I saw a neurologist at Cleveland Clinic for over a year -- too far to travel. It would appear that both of us are Cleveland Clinic Spinal Tap Graduates. (it is quite an honor, if you think about it).

Cleveland did significant testing -- very thorough -- but at the time my symptoms (on exam) were "softer" than they are today. ***



*** Although I would suggest that the first neuro I saw didn't think my symptoms were so terribly "soft" -- he knew the first time he examined me that I had "progressive spastic paraparesis"....vague, yes, but also clear:

Progressive: It will get worse, and will never go away
Spastic: We all know what this is!
Paraparesis: A neurological disorder that is characterized by weakness of the lower limbs

Yep, he had it right.

 

[olly]

[QUOTE
Progressive: It will get worse, and will never go away
Spastic: We all know what this is!
Paraparesis: A neurological disorder that is characterized by weakness of the lower limbs

Yep, he had it right.[/QUOTE]

Spot on mike!