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BLPhill

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PALS
Diagnosis
09/2008
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Hello Everyone


Got my DX yesterday, it is PLS No sign of lower motor neuron diease at present time.:smile::
I am cautiously optimistic for the first time in a while. Now what?
 

Zaphoon

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08/2011
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I'm happy that the diagnosed wasn't ALS. My understanding with PLS is that the neuros will want to monitor you for the next few years via EMG's to make sure there continues to be no LMN involvement.

Zaphoon
 

BLPhill

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thanks

Zaphoon



You are always first to respond. Thanks for that.
 

brendapals

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Joined
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PALS
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06/2008
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Congrats on not ALS, thanks for updating us,
Never give up,
Never let up,
Never lose faith,
brenda
 

BethU

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That is great news! I'm so glad for you. :)
 

Al

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In the grand scheme of things Betty, that is good news. It is usually better to know what is going on and prepare for the future.

AL.
 

sral

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That's great news Betty.

When did you have your first symptom? Has it been 3 years yet?

Here's hoping it stays PLS for good!
 

BLPhill

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Reason
PALS
Diagnosis
09/2008
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Sral

My first symptom was aprox 26 months ago. It started with creepy sensations in my legs at night, I wrote it off as restless leg syndrome. A month or two afterwards I started limping and tripping over things alot. Followed by slurred speach. currently the only people who can understand me are members of my own family. My speech has become that bad in only two months. Both legs are very weak cannot stand for more than a few minutes at a time. My left arm is weak enough I cannot pick up a dinner plate, my neck has just recently started getting in on the action meaning weakness. MY symptoms started getting noticeibly bad about 6 months ago.
 

awieleba

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HI betty,

If you dont mind me asking, how did they rule out als or decide if it was pls? do you have any twiching?
Do you get shortness of breath with pls? Did your legs ever lose any mass? sorry to ask so much, I am still in limboland and having clean emgs with increased problems.

Take care

april
 

freddiesnetty

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So happy to hear that it is not ALS................my hubby says ALS really stand for arms and legs suck! I don't know how he thinks these things up...........but thank GOD he still can keep his sense of humor..........This stupid crap may rob his body, but thank GOD he still has his mind. He can be quite funny sometimes............

I am so glad for you!

netty
 

BLPhill

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Messages
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Reason
PALS
Diagnosis
09/2008
Country
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State
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City
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April

I am still new to this so alot of questions I cannot answer. Even tho I have had symptoms for over two years I did not seek medical attention until six months ago. On my many trips to the emergency room for falls, the doctors there said it was nothing. I fell while at work about 6 months ago, I could not get my arms out in front of me to break my fall so needless to say I really hurt myself. The doctor at this time accused me of being drunk because of my slurred speach and constant laughing. The whole left side of my face and head was bloody and bruised. The funniest thing about his remark about being drunk is that I do not drink at all ever. So when he said that of course I thought It was the funniest thing I had ever heard and that set me off on another laughing spell, I started choking couldn't catch my breath because I couldn't stop laughing.

However he did recommend I see a neurologist. I did see my first neurologist who was a real idiot. I Finally came across a good internal medicine doctor who knew right away I had a serious neurological condtion. He then reffered me to a neurologist at the university of washington. There I seen two neurologists who did a number of blood tests and different neurological exams, EMG/NCV prior to receiving any test results they told me I probably had PLS possible ALS. All the test results came back. They called me back in to confirm to me that I had PLS. But still have to go back in december for 3 month checkup. They did tell me some people go on to develop ALS.

As for yor question about twitching, the answer is yes and it is constant, mostly in my legs but it is over my entire body. Cramps all the time. shortness of breath, sometimes. My voice is almost gone........:x The only people who can understand me is my daughters and my mom. My legs are very weak as well as my left hand. Muscle wasting, not that I have noticed. I think for me I came across some really good doctors after having been to so many licence to practice out of a cracker jack box.
 

BLPhill

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Messages
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PALS
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april

By the way I forgot to mention that my EMG/NCV were NOT normal.
 

olly

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Joined
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Messages
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PALS
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uk
hi betty

sorry i am late in responding to your thread,been hectic here the past 2wks but will explain that in my new thread.
sorry you have to be here,diagnosed pls is good news but your abnormal emg is not.
i was diagnosed mnd,have mainly umn symptoms but slight lower.had this for 9yrs now starting in the legs and worked its way up to involve bulbar.
i too have fassic,s,mainly in legs.
umn dominant als is slower progressing than typical als,with minor lmn involvement.
in pure pls there should be no lmn signs/symptoms at all.
i have alot of stored info if you ever need anything.
i hope your progression continues to be slow:-D.
 

BLPhill

Distinguished member
Joined
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Messages
211
Reason
PALS
Diagnosis
09/2008
Country
US
State
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City
Tacoma
Netty

Netty


can your husband still talk? Is his speech slurred? Can others understand him when he talks? Do people treat him differently because of the way he talks? People talk to me like i am retarded or something because of the way I talk. It takes everything I have not to tell them where to go and how fast to get there. Even after I tell people there is nothing wrong with my thinking, they still continue to speak to me like i am retarded.
 

BethU

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Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
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California
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Betty ... I've had to get used to it too. And even people who "knew me when" (I could speak, that is) are not immune. I use a lot of gestures, and people I'm talking to start using gestures back ! Even my husband was doing it! I had to tell him, "Look ... I'm the one who can't talk, not you! And tell me if you don't understand. ... don't just fake it and smile and nod when I tell you the house is on fire!"

The worst thing right now is people who are dumbstruck. When I talk a little bit, they get this strange look on their face ... they go completely blank ... like they are dealing with an alien from outer space. Won't make eye contact. Won't even look at me. It's really crazy.

The good thing? People remember me! It takes only one phone call from me for people to immediately know who's on the line. More vendors and sales clerks and medical office personnel have learned my name in the last six months than in my whole life.

At least it's better than a poke in the eye with a sharp stick.
 
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