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rhgus

New member
Joined
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Messages
5
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08/2011
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Va
Hi All

I am new to this and would like to know who you believe if your neurologist says one thing then your second opinion says another thing then your 1st changes his mind ?

Here is my problem:

Foot drop 4/11 went to doctor, blood tests, back and chest ex-rays Visited a neurosurgen ex-rays and said it wasn't a spine problem.
Had my first NCT and EMG.No diagnosis yet. I went to a neurologist 4/11 and he also did an EMG and NCT.
After this on the next visit he suggested it was ALS.Continued to follow up with him. After more EMG's he said I was ALS possible.
Got a second opinion 8/11 at ALS clinic in Jacksonville. Again more EMG'S and NCT. Received the diagnosis of ALS probable..
I got a brace to assist with walking( I was still walking OK but tripping occassionally (It did make a big difference)
Next visit to my neurologist 9/11 changed his mind and now its PLS . come back in 3 months or sooner if something changes.Next visit is Monday
Right now I have problems with lifting my foot towards my knee on the left foot (doesn't work at all) and limited ability lifting my right foot to my knee.
When I try to lift my left leg up (hip flexion) it does not go more than 2 or 3 inches up. Right leg flexion a lot better but still not normal.
I still can walk short distances ( with a very noticable wobble) and get up and down stairs when I have too, but try to limit it.
No other symptoms except constant leg and back twitching for about 5 months now.

I'm so confused !
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
If I had a choice, I'd vote for the PLS... there probably is no real way of know exactly what's going on until a little more time has passed. So I would plan for ALS, and live as PLS until symptoms worsen and I would have to go back to either Neuro. Are you using a cane walking?
 

rhgus

New member
Joined
Sep 7, 2011
Messages
5
Diagnosis
08/2011
Country
US
State
Va
right now just the brace sometimes feel like I should use a walker but pride gets in the way
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
Use that walker! You can't afford a serious injury from a fall!
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
Time will tell. Evidently they can't give you a firm answer yet. Yes, dam the pride and use the walker. It's better than cracking your head open Kiddo.
 
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old dog

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Joined
Aug 27, 2011
Messages
243
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
My first neurologist did an in-office EMG which was not conclusive. After about two years of no answers, I finally got a referral to the State Teaching University Hospital where the neurology dept. specializes in ALS. They ran a more thorough EMG and came up with a diagnosis of PLS. The basic explanation of PLS vs. ALS was that I am too strong for ALS. The EMG showed no lower motor neuron involvement which, apparently, is present in ALS. I can't see much difference between early ALS symptoms and PLS.

If I was a neurologist trying to come up with a diagnosis, I would look for: difficulty walking, especially with one side being more involved, accompanied by foot drop and deformed toes--hammer or mallet toes; poor balance; slurred speech; difficulty swallowing; leg and back spasms; cramps in unusual areas, such as rib cage; enhanced startle reflex; trouble controlling emotions, such as laughing; choking on air or food for no reason. In the early stages, all of these symptoms can be intermittent. Another thing I experienced was trouble dealing with stress.

None of this is fun, but it can be tolerated and, with a little help, life goes on.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
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Funny, I've had hammer toes all my life, along with a high arch, thought it may be Charcot-Marie-Tooth Disease when I first developed drop foot.
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
Same feet here! Has the doctors scratching their heads. Apparently with feet like mine, I should have bad ncs, but they are perfect. No sensory issues at all.
 

rhgus

New member
Joined
Sep 7, 2011
Messages
5
Diagnosis
08/2011
Country
US
State
Va
Hi all

Thanks for all our responses. Pride should never overshadow safety.

Went to neuro yesterday and now its PMA

He did give me prescription for brace for right leg. I will get ASAP and see how it works.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
right now just the brace sometimes feel like I should use a walker but pride gets in the way
Pride shouldn't outweigh safety. If it does, think of this scenario. You're out with a mice dress on and fall. You look down and see that your nice dress is up around your waist.

Seriously, though...be safe. Whatever it is, als or pls...falls are not good and should be prevented. Use the walker. They make some cute ones. Get a handicapped placard so you dont't have to walk so far. Be safe!
 
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