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momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Our thoughts and prayers will be with you tomorrow. Hope you get some answers.
 

guguy

Active member
Joined
Jul 5, 2010
Messages
67
Reason
Friend was DX
Diagnosis
00/0000
Country
US
State
HA
City
None
Best wishes for good news from your appointment.
 

marypat

Distinguished member
Joined
Jan 3, 2012
Messages
287
Reason
PALS
Diagnosis
11/2010
Country
US
State
OHIO
City
london
Henny penny, I will be thinking of you and saying prayers for you tomorrow. I too am a nurse and had my PCP tell me that a CPk of greater then 1200 ways just a funny little thing that would straighten itself out. I never let my neuro out of the room until I had asked him everything I can think of and then ask my husband what he wants to ask. Good luck
 

Henny Penny

Member
Joined
Jan 2, 2012
Messages
14
Reason
Learn about ALS
Country
US
State
Ma
City
E. Freetown
Thank you everone for your well wishes- you all have given me comfort during this frustrating time- here's hoping that I get some answers or direction tomorow. Bless you all!
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
608
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
be sure to write down all your questions and topics you would like to discuss before you go. Then take notes of what he/she says about different things. I bring my hubby with a laptop to be my secretary and take notes. ;) Praying you have a successful visit!
 

Henny Penny

Member
Joined
Jan 2, 2012
Messages
14
Reason
Learn about ALS
Country
US
State
Ma
City
E. Freetown
Had my appointment with the neurosurgeon today at MGH. He ruled out that my neck is not the issue. Spine is fine. So wore a cervical collar for 10 weeks for no reason. He was a wonderful evaluator spent an hour and a half examining me, reviewing every head MRI and Neck MRI twice. He said that my clinical presentation is very perplexing, have more negatives than positives. I have definate significant weakness to the left side. still have the babinski sign, hyporeflexic, failed all balance tests. He kept saying looks like a progressive neurodegenerative condition, no specific diagnosis. So he is recommending an updated head mri to focus on the cerebellum area, for atrophy as all my head exams are going on a year old, and a spinal tap. I asked him to recommend a neurologist at MGH and he recommended a Dr. Venna-he said he loves a challenge and a zebra. so will give him a call tomorrow to see if he will see me sooner rather than later. Really was hoping I would go in today and they tell me pinched nerve, cervical myelopathy...so the unknown and waiting game continues.
 

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're still waiting. I'm sure it was a comfort to get such a thorough exam. Good luck with the next step and keep us posted. We'll keep you in our thoughts and prayers.
 

marypat

Distinguished member
Joined
Jan 3, 2012
Messages
287
Reason
PALS
Diagnosis
11/2010
Country
US
State
OHIO
City
london
Henny penny, I'm sorry you don't get answers. I hope you feel like you were heard. Good luck on further testing. I'll keep you in my thoughts and prayers
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
sorry you didn't get the "easier" answers, but sounds like you're in excellent hands. Keep us posted, and stay positive.
 

CathyP

Active member
Joined
Feb 29, 2012
Messages
91
Reason
PALS
Diagnosis
12/2011
Country
US
State
Kentucky
City
Small Town in Western KY
All I can say is hang in there. Try and focus on all the good things each day brings instead of the bad.
 
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