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JMH

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Joined
Jun 11, 2006
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42
Reason
Loved one DX
Country
CA
State
Manitoba
City
The Pas
Hi,
Managed to get an appointment for my Dad on August 1st in Winnipeg with a specialist. I'm really nervous because I told Dad I thought it was important for him to go and see this Dr. I'm scared too. The outcome is going to mean that he (Dad) and we (his family) are going to have to make decisions, ask questions and come to an acceptance. I'm not sure how to go about asking questions of my own. Since the neurologist has made a diagnosis of Familial ALS without an EMG, family background, etc. what am I going to ask this doctor? I guess I am wondering how or if I should question a neurologists' diagnosis. Everyone in the forum seems to have seen doctor after doctor and some have spent years getting a diagnosis. Can a neurologist diagnose ALS just by looking closely at a patient? I don't want to sound dense but I guess it's still hard to understand after all I've read on how difficult it is to diagnose this disease. The last CAT scan showed that there are signs of spinal stenosis. Dad has trouble walking (uses a walker), is very fatigued, is weak, has trouble sleeping and has problems with constipation and urinary incontinence. He has also lost a lot of weight, yet eats well. This has all been noticeable since Mom passed away in November and has progressed rapidly since January/February.
Dad is 77 and has never questioned a doctor's opinion. I don't want to upset him or a doctor but we do have the right to ask questions, don't we?
Panicking here I'm afraid, any help or guidance would be greatly appreciated.
JMH
 
Yes you can and should ask questions. No I haven't met a doctor yet who can diagnose ALS or anything else just by looking at someone. Unless it's a skin rash. At the very least an EMG and a nerve conduction study are needed. If the doctor doesn't think that's necessary get a new doctor. He's not doing his job.
 
I would get a 2nd opinion, and a 3rd if needed. I know that in the beginning they said Momma had myoethina gravis (SP) and ended up after the spinal taps that it was ALS...

just take a deep breath...

relax,


and write down every single question you have no matter how big, or small........

and have them address those with you.

we were blessed to live close to UAB, Kirkland Clinic here in Alabama (close meaning within like 3 hour drive...lol)

Dr. marla Morgan is a God send, should you be able to get her.

I am here for you if you need someone to talk to.

(((hugs)))

you arent alone.
 
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