The undiagnosed predicament

[davegud]

Here's my layman's attempt to clear up the confusion for future generations
a. Clean EMG = no fibs/ sharp waves plus no complex fascics in muscles with chronic neurogenic change = no LMN signs of ALS.
b. No pathological reflexes, clonus, or spacticity = no UMN signs of ALS.
c. No LMN or UMN signs even with cramps and/or fasciculations = 99.99999999999999999% probability that you don't have ALS.
d. If you fall into category c, but are still sure you have ALS, I have this bridge that I'd like to sell you in Brooklyn......
I left out the bulbar stuff & defer on that stuff to the experts...

 

[munecagirl22]

Here's my layman's attempt to clear up the confusion for future generations
a. Clean EMG = no fibs/ sharp waves plus no complex fascics in muscles with chronic neurogenic change = no LMN signs of ALS.
b. No pathological reflexes, clonus, or spacticity = no UMN signs of ALS.
c. No LMN or UMN signs even with cramps and/or fasciculations = 99.99999999999999999% probability that you don't have ALS.
d. If you fall into category c, but are still sure you have ALS, I have this bridge that I'd like to sell you in Brooklyn......
I left out the bulbar stuff & defer on that stuff to the experts...

well if a person didnt have any of those signs clincally stating by a neuro i would think this form would be hard to find i guess just twitching and you would come up with als tho wish thats all my issues was only twitching.

soo fibulations and fascis is bad on an emg?..

 

[trfogey]

well if a person didnt have any of those signs clincally stating by a neuro i would think this form would be hard to find i guess just twitching and you would come up with als tho wish thats all my issues was only twitching.

It's not particularly difficult to find this forum. People that have twitching as their only symptom find their way here all the time, just like you did. The hard part is convincing them that their twitches are probably harmless.

soo fibulations and fascis is bad on an emg?..

Depends on what other things go along with them. Your neuro will tell you whether you have anything to be concerned about.

 

[munecagirl22]

QUOTE=trfogey;188296]It's not particularly difficult to find this forum. People that have twitching as their only symptom find their way here all the time, just like you did. The hard part is convincing them that their twitches are probably harmless.



Depends on what other things go along with them. Your neuro will tell you whether you have anything to be concerned about.[/QUOTE]

well i do relize this isnt my thread just seen but just wantd to let you no Trfogey, that is the one thing i didnt do google twitching or if thats so i would have googled, my twitching when it startd in dec, i mean ever single person twitchs, i havent met one who dont, when they told me yah u have ms i had noo clue as to what that was i went to a fourm to meet others like me.. then i found out i didnt. So when i went back to neuro to explore other possibilites once my systems didnt subside that was brought up bc of my reflexes and etc, so the 1st this i did was jump on here.

I thought finding fourms with others who were going thru same things as me was beneficial for me to learn more, i guess the medical field dont like to explain things more because they are scared of making you scared and worried.

just like my neuro told me iam not crazy i dont have anxirty i have actual issues but "what they are" just yet is a puzzle bc none of diagnostics are telling them anything... maybe muscle biopsy will...

 

[olly]

mrs..........magnetic resonance spectroscopy.
this is the only thing that can detect umn disease/dysfuntion but not always..............for this reason it is not used as a diagnostic test as in the early stages of mnd effecting the umn's the test can be ok.
it is used on advanced patients for study purposes only.
not all hospitals have access to a mrs but i do know they have them here in the uk and usa.......... big university hospitals.

 

[trfogey]

munecagirl22,

People here are not going through the same things you are. That's the problem with your constantly butting into other people's threads and saying things that are irrelevant at best and deceptive, misleading, and untrue at worst, just as you did here by mangling the Awaji criteria out of all recognition. Keep your "discoveries" in your own threads, where everyone can easily see just how little you know about MND, how little you've learned about it over time, and how you twist and change your own story every time you "learn" something new or get called out for bungling stuff you should know.

Quite frankly, it looks like all you want to do around here is stir up problems, like every other garden variety troll that shows up here. You don't have anything constructive to offer these other folks in the way of medical information and what happens to you is in no way relevant to what's going on with them, so have the courtesy and the basic human decency to butt out of their threads so they can get the answers and accurate information they need without having to deal with your attention-seeking.

 

[AndyDJX]

.

Andy

It's been awhile since I've heard from you. Hang in there and let me know if there is anything I can do to help. Take care in the meantime.

Thanks, man. It's good to see you on here. I still don't think I have ALS, but since things have been getting worse I'm trying to be more pro-active in figuring out answers. I know that sometimes these things don't have easy or definitive answers, but I'm trying nonetheless in hopes of some type of treatment.

I'm kind of laying low and trying not to stress about it much, but I'm guessing that I'll have some EMG questions/updates in early November.

Thanks again.

 

[AndyDJX]

Andy, sorry I'm hijacking your post. Good luck getting answers.

No worries at all, we're all just talking here. It's interesting to read about your experiences.

 

[davegud]

PS - My neuro is in Boston at BIDMC & I have a repeat EMG on Oct 11th. I'm extremely hopeful and expecting that the neurogenic changes seen in my original EMG as well as the mild clinical signs will remain exactly the same. Ever since I got the Smallpox vaccine in 2005 I have had a string of undiagnosable conditions. It was when I was referred to a "Neuromuscular Specialist" that I googled neuromuscular disease (assuming that is what these specialists are looking for) and the rest I'm sure you can relate to. In my case, I was looking for undeniable evidence that my condition will not progress to ALS. Since I have cramps as well as fascics, I couldn't get that no matter how hard I tried. I finally realized that I could be harboring 1000 other diseases, so why wasn't I afraid of them? This realization caused me to drop the obsessive fear and look at things more reasonably. It is still a daily struggle, especially with symptoms that are hard to imagine are benign... Plus it takes nerves a long time to heal, so things can linger... I still e-mail my new symptoms to my neuro & the other day I asked if he still wants me to. He said at least he will compile them in the event that I have some new condition worth future research... I think Davegud syndrome - A rare benign neurological condition... sounds much nicer than ALS!

 

[AndyDJX]

Dave man, I completely relate. It is a struggle to allow your reason and rationality to dictate your thoughts and feelings. It doesn't happen automatically, that's for sure. And it's always worse when symptoms are either new or getting worse.

Today there are two spots on my tongue that are popping like popcorn kernels. Actually, it's more of a pulling type of fasciculation, where the twitch is causing two parts of my tongue to flicker and dimple in, pretty much non stop. It's hard to ignore, and it's hard to not to think about some scary neuromuscular conditions while this is going on.

Here's the thing though; it's reasonable and rational to conclude that this isn't ALS. There are too many things that are inconsistent with it, primarily the time of progression. But it's also reasonable and rational to be concerned. To know that there is something wrong going on with your body that keeps getting worse, and to want to find answers. And when doctors can't give you any, you just end up being freaked out with nowhere to direct that concern. Which makes you feel kind of crazy, even though you know you aren't. That's part of the struggle.