Undiagnosed? Please Read This!

[Sagemark]

Nice post and well received. I relate to the frustration of everyone w/ twitching getting on the boards and complaining how scared they are to take the NCT & EMG. Some folks haven't got past the starting line and create severe anxiety for themselves. I am probably guilty of the same thing, as far as not being diagnosed, however, I have at least started the race, I've had the NCT & EMG, I've passed go and had at least two docs tell me I may have a Motor Neuron Disorder. I was so excited to be diagnosed with something other than being told it is all in my head until I found out what MND was. Now I am hoping for something else, put progression is proving them right. I hope to prove them wrong.

[ktmj]

God bless Sagemark...

Twitchers only need to not worry about ALS! And I used to be one of those!

[tonnynathan]

But you then got diagnosed anyways in 02/2009 ?? or am i missing something ?

[Zaphoon]

I have not been diagnosed with ALS. I have been given a differential dx of PLS. Big, big difference! My point in all of this was that I seemed to have all of the hallmarks of ALS at the time this was written. Those hallmarks being, progressive weakness, atrophy, spasticity, hyperreflexia and fasciculations. The EMG/NCV were normal, thus ruling out ALS.

I'm not sure how common it is for fascics to be present in PLS but mine are benign. We have a lot of visitors on this forum that fear they may have ALS because their muscles twitch. This thread was meant to put many of those fears to rest.

The muscle atrophy in my shoulder is not due to disease, but rather frozen shoulder syndrome (both shoulders). It is atrophy due to disuse.

So, you can have many of the symptoms of ALS (such as I) and still not have it.

I hope I've cleared this up for you.

Zaphoon

[tonnynathan]

arh that clears it up. Allthough i dont know what PLS is. Im here because im afraid of having ALS, i will soon when i have the time make a post of the symptoms and timeline of those.

thx for the reply

[handinhand]

Wonderful news!!!! Thanks for the email.. I think that should help lots of people who are wondering if they have this awful desease... Lin

[BrianD]

Zaphoon....

That is most excellent news! YAY!!!!!!!

Brian

[peter57]

Good outcome Kim,
Hope you stick around on the forum, who else is going to come up with anti whatever cures.

cheers
Peter

[Zaphoon]

Peter, this is an old thread from last year. Since that time, the V.A. has 2nd'd the opinion that I have PLS which is what the 1st neuro suspected.

So, I still do not have ALS - just waiting for the 5 year window to close on that. Let's hear it for no LMN!

[GlenBrittle]

Well Kim , good news is always welcome!

Stick around anyways , we enjoy your presence.

Glen

[Zaphoon]

Glen,

I have PLS. I don't think it goes away very easily. My 9v batteries aren't doing the trick.