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Brother Rock

Active member
Joined
May 6, 2012
Messages
44
Reason
DX UMND/PLS
Diagnosis
04/2012
Country
US
State
IN
City
Bloomington
I have had my second opinion and my new doctor says I do not have ALS or PLS. He said I may have a very rare genetic disorder or disease that is hard to detect so it could be a while before something is possibly known.

The plan is as follows. I had more blood taken for more test. If these too come back normal then he wants to do some intricate MRI’s of my neck to look for things that are difficult to see on MRIs so they have to be done on the most modern systems. If the MRIs do not show anything then he will try putting me on steroids for a month or two to see if they relieve the symptoms which will can help pinpoint the problem.

More wait but at lease ALS and PLS are ruled out. So I am back to having no idea what is wrong with me and no one else knows either. But at least this doctor seems challenged to try and figure it out. No other doctor has shown that much interest in my situation before and that makes me feel not so bad.

Thanks to all of you for your kind support you have shown me.

Brother Rock
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
That's good news... hope you have some good answers soon... and keep us posted!
 

sadiemae

Extremely helpful member
Joined
Sep 20, 2009
Messages
2,527
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
Yes Brother, please stay in touch.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So sorry you haven't found an answer yet, but sounds like you're in good hands now.
Please let us know how things progress for you.
 

Tokahfang

Moderator emeritus
Joined
Jan 31, 2010
Messages
791
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
We might also still be good for symptomatic advice. You don't lose your secret club ring just for getting a new diagnosis.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
582
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
Lol..secret club ring. I like that. Good luck to to you brother.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,569
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Happy trails to you! Drop by once in awhile and let us know how you're doing.
Wishing you only the best of the best.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
You have all UMN issues, right? May I ask how they decided it wasn't PLS?

And stick around if you want :) we only run off the scared newbie fanatics that are obsessed.
 

Luke

Distinguished member
Joined
Apr 3, 2012
Messages
317
Country
US
State
Unspecified
City
Unspecified
Great that MND has been taken off the possibility list, and hang onto that good doctor. Too many times, I've read posts of people in limbo who just seem to disappear from the forum at some point, leaving you desperately wanting to know what happened in their story, so I hope you'll keep us posted as you hopefully learn what's really going on with you. I haven't caught up with your past posts, but I too have an undiagnosed condition, so I know the limbo thing well. I hope you find solid answers soon. Take care.
 

Brother Rock

Active member
Joined
May 6, 2012
Messages
44
Reason
DX UMND/PLS
Diagnosis
04/2012
Country
US
State
IN
City
Bloomington
You have all UMN issues, right? May I ask how they decided it wasn't PLS?

And stick around if you want :) we only run off the scared newbie fanatics that are obsessed.

I do not have the "normal" PLS and ALS symptoms according to this ALS expert. I do have symptoms of a disease of the spinal cord. My symptoms mimic someone having stenosis in the cervical area of the neck. I had convinced myself I did not have PLS when I read all the poor souls on this site were suffering from. In fact this is what really helped compelled me to get a second opinion. I never experience pain. I did lose muscle mass but only in my right thigh. I have loss of feeling in my right palm and my right buttock and I suffer from drop toe.

I hope I did not ramble too much and answered your question.
 

Brother Rock

Active member
Joined
May 6, 2012
Messages
44
Reason
DX UMND/PLS
Diagnosis
04/2012
Country
US
State
IN
City
Bloomington
I will keep in touch as what I may have may be what someone on this sight has. That is if we do find out what "it" is that I have.
Thank you
 

Brother Rock

Active member
Joined
May 6, 2012
Messages
44
Reason
DX UMND/PLS
Diagnosis
04/2012
Country
US
State
IN
City
Bloomington
The doctor I am working with currently who has said I do not have ALS and PLS is Dr. Pascuzzi. He is the ALS and PLS expert for IU Hospital Neurology clinic in Indinapolis IN. He is suppose to be well known in the ALS community.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
I'm hoping they find something fixable for you! Thanks for answering. Keep us posted, if you can.
 
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