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Music67

Distinguished member
Joined
May 19, 2014
Messages
246
Reason
PALS
Diagnosis
08/2014
Country
US
State
Washington
City
Bellingham
Hello everyone!
I got diagnosed with probable ALS today. With me its my weakness of ankle, arm & hand on left side of my body after 2+ years of symptoms. I wear an ankle support most days. My other side feels quite normal. I still feel pretty good, all in all - don't have much loss of energy so far. I walk for 1-1/4 miles each day which keeps me going, I guess. The neuro based part of his diagnosis on my leg reactions to his tapping them with his prong (of all things) and the rest on an EMG of my back - the details of this I am still fuzzy about. His partner neuro suggested I probably have ALS because of fasciculations on both sides of my spine as well as having a low gm-1 antibody number - both of these conditions I am a little suspicious of as far as being strong indicators of ALS but we will see in time. I sure notice that most everyone has a different story to tell in this regard but I am here to say that I support & respect everybody's situation.
 
The emg is an important factor as is your ability to go to an als clinic or specialist for a second opinion...not saying your docs are wrong but this disease pretty much demands a second look.
 
>I got diagnosed with probable ALS today

from an ALS-specific neuro or clinic? if not, I recommend a second opinion with one .... terminal didease is not 'probable' ...
 
Hello Mediasmart,

I agree with your advice & I'm getting a 2nd opinion at another clinic next week.

Kindest regards,
Music67

ps I recall seeing a post of the different types of diagnosis such "clinical". Do you know where I can find that post or, if not, what the other 2 or 3 types of diagnosis were?
 
MaxEidsvik - Hi, I did get this diagnosis by a neuro from the ALS dept. of a large metro hospital.
 
>Hi, I did get this diagnosis by a neuro from the ALS dept. of a large metro hospital.

go to a major clinic -- mayo, jh, hm, any to get real confirmation IMHO ...
 
U of washington and Virginia Mason have good reps Are they where you are going/ have been?
Sorry for your diagnosis. Was it " you probably have ALS" or " you definitely have probable ALS"? There is a big difference. If it is the second you would have EMG findings in 2 regions of the body plus findings in those regions on the clinical exam ( such as the reflexes you mentioned)
Did they offer rilutek?
I have the leg/ ankle weakness too. No fun! Take every precaution you can so you don't fall. Good you have the brace!
 
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Hi,

Yes it was at Virginia Mason. I go back to the VA where I started a year ago for a clinic evaluation next week.
 
Be sure to take your records.

I loved Bellingham. Graduated WWU. Lived by Silver Beach on Lake Whatcom.

There are major differences between 1) Clinically Possible ALS, 2) Clinically Probable ALS, and 3) Clinically Definite ALS. Any of them is adequate to support your VA benefits and Social Security Benefits and Medicare.

Your local VA clinic might not understand ALS. Indeed, nearly no one you'll meet has the slightest idea what it really means. But the Seattle VA should have a Spinal Cord Injury clinic that specializes in ALS. There are many, many valuable benefits VA will give you now, but you'll have to know how to get them.
 
Mike's right ...

>There are many, many valuable benefits VA will give you now, but you'll have to know how to get them.

get a PVA rep ASAP. let us know if you need help!
 
All I want to chime in is for you to be careful of falls rather you truly have ALS or not. Falling can really set a person back. Please use every precaution possible to prevent one. My dad had horrible falls before his diagnosis. Best of luck to you.
 
>All I want to chime in is for you to be careful of falls rather you truly have ALS or not. Falling can really set a person back. Please use every precaution possible to prevent one.

ditto this! this cannot be emphasized enough ...

>My dad had horrible falls before his diagnosis.

3 times for me - broken rib, broken nose, concussion.
 
I was lucky, never broke anything but had a lot of bruises and the last major fall I messed up my hip pretty bad, think that's why my right leg is almost useless now
 
>and the last major fall I messed up my hip pretty bad, think that's why my right leg is almost useless now

dumb and dumber :)
 
Yeah, buts it's been about year and a half since then, learned real fast to use what ever aids I could. Eventually into a chair but it is what it is
 
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