Time to leave

[worrywartken]

Well like most people I came on here for some advice and maybe some answers for the questions I asked about hereditary ALS and muscle twitching for 5 years...Some people were nice and some not so nice....I read a lot of threads and a lot of answers...people are always apologizing for their questions because a few make them feel like idiots...I'm sorry for everyone that has ALS and maybe the questions add to your frustrations but I thought that this site was to help answer questions. ..If it makes you that mad just don't reply....anyway best of luck and since my brother had muscle twitches for 20 years before he got ALS you just never know what's going to happen. ..thanks for your wide variety of answers...and believe me we all know your not Dr's but sometimes people are looking for a little knowledge in a manner that might help them and not feel guilty about writing something in fear of being humiliated.....good luck.....worry wart.

 

[olly]

Oh little worrywart,dont take it all to heart.

I have spent hundreds of hours over the past 6yrs answering on this part of the forum.........
Always the same questions...
People goo gle ing first....
Coming here first.....
Not seeking medical advice first....

Pals with limited function ,severe disability and just not damn well can find this forum frustrating.

Hey,you got a nice response from me...your privalidged you got me out of DIHALS forum hibernation to post you.

Take care and all the best.

 

[megan80]

it is hard to imagine what the PALS are going through and it sounds like they are probably dedicating a lot of time to typing with responses due to their inability to just do it the way we can still do it in most cases. I understand the real fear of this disease though. I stumbled upon this website when I typed in a google search so I fit well into the category of googlers who fear the worst when first finding this. I do however also have personal experience with a severe neurological disease from my fathers point of view and personally understand the terror he suffered when finding out he had a fatal disease. (Not ALS) but one that takes just a few years longer to ruin the body and not the mind until the very last moments basically. I think for most of us it is difficult as PALS are probably well aware as there is simply too much information out there now. Before I knew about ALS I was blissfully unaware of its existence and threat to people. When I started getting symptoms I just put it down to overuse. I am still praying that is all I have and all my symptoms ( I have many) are all separate and coincidentally happening at once as opposed to being related. I have read old posts from the veterans of this forum may they rest in peace and I see the need of this forum still. But I understand the frustration of people on the forum who are diagnosed to have to deal with the constant terror of googlers and people with real symptoms alike. I hope all of the above are not diagnosed ever with a neurological disease because none of them are ever kind to us mere humans. But to the PALS who are on this forum thankyou for any support you have offered or will continue to offer in the future and please forgive us our terror and at times frustratingly repetitive questions whilst you deal with the real known affects of ALS in your lives. I wouldn't abandon ship just yet worrywartaken! But do go out and live well today just incase tomorrow isnt'waiting for us :smile: Because believe me I am trying very hard to do that too.

 

[Bliz]

You wrote you had not known your brother and the only thing you know is that he died from ALS. How do you know he had fasciculations 20 years before he got ALS? That would be very worrisome for us who twitch for years (7 for me).

 

[worrywartken]

I said I never saw him or knew him....When he was diagnosed with ALL he got ahold of my mom to ask her things....we texted back and forth for awhile and that's when he told me he had twitches that long.....I've had them for 5 years....I guess if I have another 15 yrs of twitching before something happens I'm good with that.....everyone's different in the way it happens...

 

[Bliz]

I dont get it..in the first post you said you had found out your brother had died from ALS... Now you say you were texting with him?
Anyway, how do you know he was not experienceing the normal twitches as everyone does, from time to time..

 

[worrywartken]

Sorry I didn't go into detail on the first post...I was just asking about long term twitching and hereditary ALS...I'm not lying to you about texting him...He said he had twitches for 20 years and knew something was wrong when they stayed in one spot on his arm and didn't go away....

 

[slimva]

There may not a be a direct correlation between his initial twitches and then being diagnosed with ALS. If there was, that would mean he had symptoms for 20 years, that would cause all kinds of stress to everyone that twitches

 

[worrywartken]

You got me...I didn't know him during those 20 years...not sure how it works that was the main reason I got on here...All I know is what he said .... who knows maybe we are a family of twitchers..There are all kinds of different scenarios of the beginning of ALS from what I've read on here..believe me I hope they were just normal twitches

 

[slimva]

I'm not doubting he twitched, I'm just throwing out the idea that hopefully he wasn't having symptoms for 20 years. And yes, I agree there are all kinds of symptoms that have led to a diagnosis, that's how I ended up on this site.

 

[olly]

I started with pls/mnd 15yrs ago...started leg onset...started with fasic's 7mths about after onset....14yrs later not changed to als or got als atrophy....Fasic's still going strong.

 

[slimva]

So olly, you didn't have symptoms for 15 years, you've had an actual diagnosis, right?

 

[worrywartken]

Never know he might have had the same as you olly....

 

[olly]

Started with symptoms 15yrs ago,saw rheumatologist first then neurologist 6mths after start of symptoms.......after years of testing for ms and ruling everything else out was diagnosed in 2007. Had clinical weakness on my first neuro exam.

You can get benign twitching with pls,ms and many other neurological illnesses.

Do I think your brother had pls...don't think so but he could have had umn dominant als maybe .
Pls does not change to als that is why they wait3-5yrs before diagnosing pls to rule out lmn signs of als......very rare it changes after 5+yrs (possible umn dominant als).
If your brother had twitching for 20yrs with no other symptoms then I truly believe the twitching he had before diagnosis was unrelated and benign.

My son is a healthy 6ft 2 bodybuilder and twitches and cramps like crazy.

 

[worrywartken]

Well that could be the case but like I said I never knew him in those 20 years....now if I could only figure out the weird feeling on my tongue that feels like a weak 9 volt battery on it for the last 5 years I'd be happy....or maybe not...lol