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Gracie

Active member
Joined
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63
Diagnosis
09/2007
Country
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PA
City
Altoona
Finally had second opinion at UPMC Pittsburgh with a top notch neuro. First diagnosis was PLS in September 2007 from neuro near our home. We were told if all testing (which was very extensive) proved negative here then he would like us to go to Pittsburgh for second opinion at UPMC. The neuro in Pittsburgh was extremely thorough and we liked him very much as well as respected his credentials as this man appears to be brilliant and devotes much of his life to ALS/PLS research. After an extensive physical examination and review of all blood testing, MRI films and reports, spinal taps and brain scans he told us that he has been in this profession for twenty years and has only seen two true cases of PLS. He of course ordered more testing, Zinc & copper levels, CT Scan of the chest and another Cervical MRI of the spine. This doctor does not eliminate MS but requested another brain scan to be completed in a month or so. To date we have been searching for an answer for fourteen months with top notch physicians in our town as well as Pittsburgh and still we have no answers. My husbands condition continues to spiral and we are truly in the medical twilight zone. All the new tests are not in yet and I am not a betting women but I'll bet we aren't even close to an answer yet. The UPMC physician said you have to have PLS for four years before it is a true diagnosis and I think that is what they label your condition with when they just don't have an answer.
 

CindyM

Moderator emeritus
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3,543
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Learn about ALS
Country
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New England
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Hi Gracie. It is very discouraging that they can't give more definative answers! And I am sorry to hear his condition is getting worse. I wish things could be different for you. :sad: Cindy
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hi Gracie Youi said medical Twilight Zone ,you are so correct ,last i checked i think the figures are 2000 PLSers in the US, which has 200 Million ,kind of tells you what rare is . And No Doctors do not know what to do . Can you imagine why we arent that lucky to Win the Lotto LOL, just a little Humor. Im a PLSer myself
8 years i was 55 now 62 + Ive been to ver 30 Neuros ,most dont want us around because any potential treatment could go wrong . We're dealing with unknowns , No protocol for treatment . My brother in law died of a very rare disease which started much the same as ALS PLS Wegenners Granulomustosis . If you go to NORD you can see all the rare diseases and wander . The trick i have found is DO NOT GIVE UP God Bless. Geo
 

DBowman

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Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
US
State
Virginia
City
Harrisonburg
Hello, Gracie...

I displayed symtoms similar to ALS and went to UVA hospital in Charlottesville, Va. But because it took place slowly over a few YEARS they doubted that it actually WAS ALS. So I got a second opinion at JOHNS HOPKINS in Baltimore, Md. where after tests(combined with the ones from UVA) I was diagnosed as a "classic" case of PLS. What kind of symptoms does your husband have?
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Do you remember the little thermometers that you put on a child's forehead and it gives their temperature?

Wouldn't it be nice if they invented one for ALS and PLS.
So sorry everyone has to go through all this worry, money, fear, etc. etc. without so much as knowing what they truly have wrong with them.
It's enough to drive you goofy: :)


Just a little something to help you maybe smile a little, I hope.
God Bless
Capt AL
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Whered you get a Picture of My Kitty . Thanks Geo
 

Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
I displayed symtoms similar to ALS and went to UVA hospital in Charlottesville, Va. But because it took place slowly over a few YEARS they doubted that it actually WAS ALS. So I got a second opinion at JOHNS HOPKINS in Baltimore, Md. where after tests(combined with the ones from UVA) I was diagnosed as a "classic" case of PLS. What kind of symptoms does your husband have?
Hello DBowman, thank's for your interest. My husband has clonus of the right foot, some numbness and tingling right side of right foot, Babinski right knee, hyperflexia of both legs and hyperflexia of both arms. He gets spasms in calfs and upper portions of his legs upon excersion. He has to walk with a cane now as his balance and mobility is greatly affected. He tires quickly when he tries to do anything as he was a machinest, enjoyed working with wood and he was an outdoorsman hunting, fishing and golfing. He sometimes complains of his skin feeling hot and tingling mostly across his shoulders and underneath his arms and appears to happen when he is in his most relaxed state (resting or sleeping). We think he has had some of the symptoms for about 14 months now but it has increased considerly since September 2007. does any of this sound familar?

Thanks, Gracie
 
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