mom diagnosed with ALS today

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cperdue

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Loved one DX
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virginia
This is my first post to this forum, however, I have been reading these threads for a couple of months now and must say I am inspired and amazed at the strength and courage of all. God bless you all. My mother started slurring her speach back in the summer. We finally convinced her to see a doctor a couple of months ago. The neuro said today he was confident it was ALS. This was her third visit to this neuro and ALS was mentioned at the first appointment. My questions are this: 1) How can a Dr. mention such a life altering disease at first appointment only from a clinical evaluation? Is this normal? 2) The Dr. said he had NOT tested for Lyme or thyroid. Isn't this part of the normal "ruling out" out phase and should have been done before diagnosed? 3) IF this is really ALS where do I go from her. Any suggestions will be helpful.
 

brooksea

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Re: mom diagnosed today

cperdue,

1) I don't think it's normal to mention ALS on the first visit. Has she seen an ALS specialist?

2) I can only tell you my husband was tested for everything under the sun, including Lyme and thyroid!

3) Back to number one: Has she been to an ALS specialist/clinic? If she does have ALS, she needs the clinic to help her acquire and understand what she will need to help her. The clinic will have all the professionals she may need to prescribe her treatment to help her
live with ALS, all in one visit.

I hope she does not have ALS!
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
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2,397
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Lost a loved one
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09/2009
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NV
Re: mom diagnosed today

In our situation the Neuro confirmed she thought he had ALS after a 20 minute exam, but then said we had to have tests done to rule out anything else. Our situation was different, as he had had symptoms for a long time, but we didn't go to a doctor until I figured out it was probably ALS. I told her I thought he had ALS, and she told me I was right. We also had tons of tests done http://www.medicine.virginia.edu/clinical/departments/neurology/what-we-treat/als_ndd?searchterm=ALSe.



http://www.hamptonroadsneurology.com/files/pages/riverside-als-clinic

Here are 2 ALS clinics in VA I found
 
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CAHPAH

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Mar 1, 2010
Messages
298
Country
US
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MO
Re: mom diagnosed today

You are correct, there are a lot of things to rule out before a diagnosed of ALS can be made. I suggest you go to an ALS clinic or at least a Neuro that has experience with ALS. Our first Neuro mentioned ALS only to say that he could asure us it was NOT ALS. Wish he had been right on that one. Best of wishes to you.
 

hope2000

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Joined
Nov 15, 2010
Messages
26
Reason
PALS
Diagnosis
08/2000
Country
US
State
texas
Everyone is correct you have to have more test done and most importantly get a second opinion. It took almost two years to diagnosed me. one because doctors at baylor said there was no way I could have als I in my early 30's. but in the end It was ALS good luck with everything and you can read my story on living w/als more than 10 years. GOD BLESS YOU AND FAMILY
 
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