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JJBroc

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Hi,
Sorry to have to meet everyone one here under these circumstances. This appears to be a horrible disease and my prayers are going out to all of you.

My mother-in- law was just diagnosed with ALS today. Actually she was diagnosed with "Droopy Head Syndrome". I believe after researching DHS led me to her having ALS.
Am I right?

Her head is dropped into her chest, she has a hard time swallowing and has lost her sense of balance, causing her to fall several times within the last four months.

What test should Doctors be performing for this diagnosis? How long should it take to diagnose? I just feel like that labeled her with it all to quick.

Thanks for all your help,
JJBroc:confused:
 

JJBroc

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Dropped Head Syndrome

Okay we have learned a little more. First it's not droopy it is "dropped". The docs now say that blood work has come back without ALS signs. I do not know how to interpret all this, they say to take it one day at a time. I think the doc is trying to be nice and is letting us know that the DHS will likely lead to ALS or parkinsons. More then likely ALS seeing she has no shakes or tremors.

Thought I would check here to see what your thoughts are.

Thanks
JJBroc
 

brooksea

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JJ,

An EMG and Nerve Conduction Tests must be performed to determine ALS. Blood tests rule out other things. (I'm no doc, by the way)

Head drop could be caused by several different things not just ALS. What other symptoms does she have?
 

Al

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Just an observation but the only people I've seen with drooped head or whatever they want to call it have had ALS quite a while or were advancing so quickly that a diagnosis should not be hard to make. This doesn't sound like your MIL from what you describe.
AL.
 

JJBroc

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Thanks

Thanks for the input. Blood work has been done. Doctors are suggesting a blood transfusion. They say that if we do not see improvements from this within a month then it is ALS and there is nothing else they can do. I would think that ALS could be diagnosed.

I realize the information I am relaying may seem a bit off, but it is due to me getting this information second hand instead of the source. I am going to have My mother-in-laws children (including my wife) start weighing in over here, it would probably lead to more accurate feelings from the people in this forum.
Thanks
JJBroc
 

crystalkk

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jjbroc

What kind of nuero is she seeing?
Please get another opionion from a als specialist.
 
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ZenArcher

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Here's my feeling based on what you've told us: your MIL's doc is a complete quack and should be avoided at all costs.

A transfusion has nothing to do with and will not help diagnose ALS. If they believe it is ALS then they should have done or scheduled an EMG and NCV as jimercat said. I'm guessing that something has been lost in the communication chain between you and the source. If not then find a new doc.
 
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