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Mr. Bill

Member
Joined
Nov 24, 2008
Messages
25
Reason
PALS
Diagnosis
09/2004
Country
US
State
MN
City
Hometown
I am curious about what is the longest someone has seen a neuro before they were diagnosed with ALS?

My neuro says that if someone's PLS is going to turn into ALS, it will happen within three years.

I was originally diagnosed in August of 2004. I was referred to a Neuro at the U of M and he said it was more like PLS and was 90% sure.

This last fall, after four years, he changed the diagnosis to UMN dominant ALS.

I know that not everyone is the same but it seems like some of the people on here have had symptoms for several years before ALS was diagnosed.

Bill
 
Two years two months ...
 
Hi Bill--My symptoms of loss of balance and falls started Jan 06. First saw neuro Aug 07, and diagnoseded with ALS, Sept. 08, and UMN Dominant, Nov. 08 by an ALS specialist.
 
Bill,

The positive side is that UMN dominant ALS is supposedly slower in progression. The way the neuro put it for my mom was that regardless of whether UMN turns into UMN dominant ALS the progression is what it is. The title changes or diagnosis change does not change the progression is what he explained.

By the way, did you get checked since '04 or did you get re-examined after 4 years and then they noticed the LMN component?
 
Sral,

Believe it or not, I found out about the diagnosis change by accident. I had called the ALS nurse to get some information. In the process she read my Neuro's notes of our last visit and mentioned the change in diagnosis. He never said anything to me about any changes so I don't know much about it. I do know that a lot of things have changed in the last six months.

I know this sounds kind of weird, and I have no idea why he didn't say anything. I'm guessing that you guys know a lot more about the diagnosis than I do. I do appreciate your input.

Bill
 
Hi Bill,

I'm sorry to hear that alot has changed in the last six months. You said you've had symptoms for 4 years have the last 6 mths progressed much faster than the other 3.5 years?

As for not mentioning the change in diagnosis, he probably was thinking that regardless of PLS or ALS it does not change things in terms of what's happening to you. He probably wouldn't alter what he's doing based on the change so why make you preoccupied.

Hope you're doing well.
 
Sral,

Prior to this I had only problems with my legs with fasics, cramps and soreness. In the last six months I've started to experience arm weakness, trouble swallowing. I've also experienced gastro intestinal problems also. Just seems like a lot has taken place the last six months.

I'm not sure the Neuro's purpose in not telling me, but I don't have a problem with it. My wife wants me to go in right away and see him again. I told her I'll see him when I'm scheduled in March. Whether I see him or not it's going to progress as it will.

I think that I have a bigger problem not knowing for sure one way or another more than a problem with the disease itself. I watched my dad go through ALS so I know pretty much what to expect. I guess we all want absolute answers in a situation where nothing is absolute. Hope your Mom is doing well.

Bill
 
Mr. Bill,

I noticed you said your primary issues were fasics, cramps and soreness. Can you describe more or refer me to where you described it already, if that is the case. Or just tell me to MYOB (even though I prefer the acronym BYOB)

I have 24-7 twitches, I have never thought of them as a problem...I had them for probably 9m months to a year before the other stuff became noticeable and I finally went to a doctor. Cramps are one issue for me, but it is the muscle soreness (and resultant stiffness) that is doing me in and impacting my life the most. So I am just curious...

Lydia
 
Mr. Bill - I would say a problem with not knowing your true diagnosis is that Social Security recognizes ALS as a fast track disease and approves right away. So you get SS and Medicare 6 months later. I don't think that is the case with PLS.

Just info. Sharonca
 
Sharonca,

No, I got SS four years ago from the diagnosis my first neuro gave me. My present neuro is the one that said he was 90% sure it was PLS. It was only last September that he changed the diagnosis. Maybe I'm making too big of a deal out of it.
 
Lydia,

When the twitches first started it was only after using my legs quite a bit. They are now present all the time and visible. My leg pain was caused by 3 bad discs in my back which I had a spinal chord stimulator implanted. That took care of my leg pain.

My legs still get stiff, but not like the other pain.

I can cause my calves to cramp at any time by pointing my toes down. The thing is now they don't hurt....I can just flex my foot and it will go away. Go figure.

Hope this is what you're looking for. I'm kind of dense sometimes.

BYOB sounds good to me, I'd never tell you MYOB. :eek:)
 
Hi Bill,
On the same questioning line as Lydia: Did you ever have a "clean" EMG / NCS? Were you ever told you did not have ALS / PLS? And are you saying that your first and only initial symptom was twitching?
Thanks so much,
Suzann
 
My original symptoms was the twitching after any exercise. My legs also got very weak rapidly. This is the reason I saw my family Dr. and he in turn referred me to my first Neuro who diagnosed it as ALS. He in turn referred me to the U of M to the Neuro who had taught him.

The second neuro gave me an EMG and said that he didn't see any abnormailities and he thought it was PLS. Keep in mind now that my father passed from ALS when he was 62. This fact kept the Neuro from saying it was definitely PLS. He had never heard or seen a case where the father had ALS and the son had PLS. In all I had 3 more normal EMGs. It was during my last visit that he evidently discovered something in the physical examination that led him to change his diagnosis to UMN Dominant ALS.

It sounds strange, but it's true.
 
wow bill,i have found your diagnosed and progression very intresting.
the fact that you had clean emg,s untill the last one and considered possibly having als could stir up a bit of a frenzy here among the un-diagnosed,ed.
wright will agree if he see,s this.............you are a very rare case and no one should think of comparing themselves with you.
i am just diagnosed,ed mnd not pls or als as my symptoms/signs are in between.
but my neuro says as you said ,its all down to progression that counts.
i hope your progression continues slowly.:D
 
Olly,

No one ever accused me of being normal! :eek:)

I think if it weren't from my father being a victim of ALS that I probably wouldn't even be diagnosed yet. I knew that these twitches weren't normal, I knew that swallowing food three our four times to get it down wasn't normal. I knew the unexplained weakness I felt wasn't normal. All of these things are relatively minor and I never would have seen a Dr. about anything except for my experience with my father.

What I'm saying is that I probably was more sensitive to certain changes in my body than most people would be. That's why I was diagnosed so early, many people probably don't see a doctor until they're well past the point I am. I don't mean to alarm anyone and by no means do I claim to be representative of people with PLS or ALS for that matter. If I have given anyone reason to be alarmed, I apologize.
 
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