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Kewanee

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Joined
Jul 6, 2007
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35
Reason
CALS
Country
US
State
New England
City
Skowhegan
My Physio. just diagnosed me with ALS because he found problems in both arms and legs.
However he seems to be overlooking the fact that my presenting symptoms included dropped feet with no reflexes.

I started with hyper knee reflexes that went away in 2-3 weeks. The are normal.

I told him my legs and feet went with electrical impulses that fired down my legs from knee to feet until they finally dropped. They would lift with every impulse for awhile.

Should I question this diagnosis? I've had things going on for quite a few years as well.

Kewanee
 
I haven't read all your posts, but how can you be diagnosed with ALS by a physiotherapist? Have you had an emg by a neurologist? A physio isn't qualified to diagnosed a severe neurological condition that is so complicated.
 
I would definately get another opinion by an ALS specialist or a nueromuscular dr.
 
I vote for another opinion, as well. If you haven't been checked out by a neurologist yet, you should if ALS is being brought into the picture!

How many things have been ruled out in your case? The conclusion of ALS is arrived at by ruling out ALL else. In your opinion, has everything else been ruled out yet?

Zaphoon
 
I vote for another opinion, as well. If you haven't been checked out by a neurologist yet, you should if ALS is being brought into the picture!

How many things have been ruled out in your case? The conclusion of ALS is arrived at by ruling out ALL else. In your opinion, has everything else been ruled out yet?

Zaphoon


Thank you all. There is more to this. It is thought my Mom the last few months of her llfe had ALS. No emg. We had taken her to a neuro because her voice seemed different and she said her eyes bothered her. We were thinking stroke.The Doctor saw these minute fasics at the inside of her arms. She died because she took a fall and had an event in surgery to replace her hip. I don't have these visible small fasics anywhere but do get spasms.

My moms youngest sister had ALS they thought about 30 years ago. None of this helps me.

I've had involuntary movements since I can remember and parathesias as well as restless leg. EMG never diagnosed anything until Nov.-Dec. 2007. He said ALS too, a neuro. but would not listen to me when I said about numbness and zapping shocks ect. MRI is the only other thing I've had for testing. When I was in S. Carolina and was having strange problems they gave me what they call a QST because the emg then only showed one muscle, tibialis anterior was not right. The QST said "sensory neuropathy, axonal."
They went through three machines because it was so bad. My feet and ankles had no reflexes then either. So over many years.

The Phyciatrist is at the MDA way up north. The Dr. that I most liked was the geneticist which said you don't have ALS and nothing relative. He left for Pheonix. This Physio. is trained and certified in electrical studies but so help me sensory does not always show up on those tests, especially small fiber. First neuro said I don't care what you say you have something else as well, it's ALS. Real kind fellow.

I have some weakness in legs and ankles and base of back. My hands can trigger finger but always return to normal. My voice gets scratchy if I talk to much or to long but I eat and drink fine. No doubt about the reinerveation ect. mostly in legs.

Oh yes one other neuro. said no quite recently. Said I was to strong and it's been to long and she see's no fasics. So need advice. I thank you all.
Kewanee
 
Well I see I've confused some people. I went back and reread my post and I'm confused.

Anybody else have the loss of reflexes?

Kewanee
 
I'm pretty sure there are those that have gone from hyperreflexia to noreflexia as ALS progressed.

Zaphoon
 
Yes you can change from hyper to loss of reflexes, later in the disease.
 
I do not think I have lost any reflexes, maybe slowed down a bit.

Whenever I see apple pie , or caramel ice cream , or Corona beer , my mouth still opens. Yep , that reflex is workin good.

Glen
 
Sam Adams Boston Lager (but I don't drink beer anymore...):mrgreen:
 
Big Rock Black Amber Ale, as dark as Guinness poured into my PEG just because I can. And it has lots of calories!
 
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