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Willow

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Joined
Dec 28, 2006
Messages
102
Reason
DX MND
Diagnosis
04/2012
Country
CA
State
East Coast
City
NA
Well I went to the neuromuscular clinic for our area and in many ways have more questions and few answers. Dr. exam , EMG and NVC tests indicate damage in legs and arms...sorry I can't remember if it showed anywhere else. In some regards the tests leaned toward a muscular disease, but then they lead towards a nerve damage diesease.....at the end when they got hold of the pathology for the biopsy it appears that both are involved. At that point the Dr. just stopped and said we really need to just re-group and get our people to go over all these tests/images and pathololgy and then we will contact your dr. They also did blood work.
I was told this is genetic and what I have lost so far will not get better....physio is key to maintaining what I have now and help to prevent further loss. There is no way at this time to know if or how much worse things could get....we won't know anything now till they confer with everyone and get back to us, which could take some time.
The unforutnate part of this session is that the Dr's tended to talk with each other as the study is being done but not you as the patient laying there. You only get to "pick up" little things along the way. Our "time" to discuss the results was cut short by the findings of the pathology report which kind of through things into a kerfuffel! I did get a little testy at that time, which I shouldn't have, but I am also tired and sore from all of this.
 

CindyM

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Sep 17, 2006
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3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I am sorry to hear all this, Willow. Hopefully there is some wiggle-room to put a better spin on all of this. Maybe they'll come up with one of the less debilitating MND's or nerve diseases. Cindy
 

edna may

Active member
Joined
Dec 13, 2006
Messages
66
Reason
PALS
Country
US
State
orange county
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laguna woods
I am back

Willow said:
Well I went to the neuromuscular clinic for our area and in many ways have more questions and few answers. Dr. exam , EMG and NVC tests indicate damage in legs and arms...sorry I can't remember if it showed anywhere else. In some regards the tests leaned toward a muscular disease, but then they lead towards a nerve damage diesease.....at the end when they got hold of the pathology for the biopsy it appears that both are involved. At that point the Dr. just stopped and said we really need to just re-group and get our people to go over all these tests/images and pathololgy and then we will contact your dr. They also did blood work.
I was told this is genetic and what I have lost so far will not get better....physio is key to maintaining what I have now and help to prevent further loss. There is no way at this time to know if or how much worse things could get....we won't know anything now till they confer with everyone and get back to us, which could take some time.
The unforutnate part of this session is that the Dr's tended to talk with each other as the study is being done but not you as the patient laying there. You only get to "pick up" little things along the way. Our "time" to discuss the results was cut short by the findings of the pathology report which kind of through things into a kerfuffel! I did get a little testy at that time, which I shouldn't have, but I am also tired and sore from all of this.

Hi willow just a few words, sorry you are left with the wait & see. I'll keep my fingers crossed for you, that you will hear soon. EM
 
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