Be careful

[comfortable with ALS]

Blinza,
Hun you have to calm down just because my situation turned out not to be good doesnt mean yours is...I know you think because the docs say an emg would show bad after 4 or 5 thats not true in my case i will send you my report from dr.Eric piorio my emg was bad i did mine to close togather like everyday i was at the docs fliping out..he told me it can take a year after symptoms and sometimes 2. I met Loris dear brother tim in the hospital it was the saddest thing ive ever seen. Besides helpkeri.com no matter ALS is so sad. Guys lets just hope for a cure.. Annmarie my dear dear friend is not doing very well i saw her and it breaks my heart to see her 13 year old darling son and wonderful husband watch her go through this. She has been an inspiration to me and would give me the shirt of her back if i needed it. I would do the same..and i have to tell you this women is an angel sent from heaven to me. If we would of met in a resturant (chinese especially and ordered #2) she would be my best friend and i know people say i have a best friend but she is the best friend anyone could ask for.... Ilove you Annemarie Jenny benny

 

[Blizna]

Well, thats the main point - every ALS specialist told me that EMG changes are present BEFORE any symptoms appear, beucase symptoms appear DUE TO changes. I was told not even single of them saw twitching before other symptom...Weakness/twitching are later, caused by denervation.
So if your EMG were clean and later you really developed ALS, that means those werent done correctly (or interpreted), or you have something that only mimics ALS...In relation to you age it would be much more likely than ALS..
Me and a few others members have some doubts about your case..too many rare exceptions together.
ALS in 24 years..well could be, however its very, very rare. Start with twitching for months without any other syptoms? Almost impossible. Have more than 4 clean EMG after onset - no way. Put all those rarities together..
I have told that my neuorogist and was told that this is not possible with real ALS, there was ONE documented case of person who had ALS after 1 year of twitching - there is study about it! So if your doc was telling truth (that it takes 1 year to show after symptoms), study like that woudlnt be published. But they are, because its unusal! Think about it.
PS: Im not saying you are "fake" (as my neuro said about this case), maybe you have some very atypical form, definitely not pure ALS..hopefully with this atypic form comes also atypic lifespan..wish you the best anyway

 

[olly]

jenny

firstly i echo your sentiments with regards to annemarie,both she and lorie are good friends.
i did follow your posts through to diagnosed,i know you had a rough ride with doubts from others.
i too was supprised by your final diagnosed and very sad for you having young children.
i feel i have to comment on your behalf to blizna.

blizna.
i have done relentless research and some cases of als are anything but typical.
given jennys age she would have juvenile als,this can be very slow progressing and they can live decades.
just look at steven hawkings,he had juvenile onset and could still walk with aids,have kids for many years into his illness.
also there is umn dominant als with a slower progression and longer duration,though this term is usually used in studies and they would be diagnosed as als,sometimes pls depending on the neuro.
i am atypical,i fit inbetween so i was just diagnosed,ed as mnd.
not everything is in black and white and neuro,s dont know everything,this was said by my neuro who is in his 60,s and a very experienced proffesser of neurology.

 

[Blizna]

Olly,
I agree with juvenile onset etc...I only wanted to say that Im not alone who doubt this story a bit..just because it goes again everything known rules about this disease.
And this post from scared of als has just one goal - to tell people that they cant be sure after 1 year of EMG, by other words, to scare undiagnosed. Thats is very strange, fishy..
But stop discussing about it...on the Internet nobody can be sure you are reading truth.

PS: About S.Hawking, doctors arent sure he has ALS but soem kind of atypical MND.

 

[crystalkk]

blinza,

I don't think Jenny was trying to scare you. I think she was trying to say just because it happened
to me doesn't mean it is going to happen to you. And like she said she had alot of emg's very close together
she was constantly running to the doctors.

 

[awieleba]

WOW!

Let me first start by saying that I have met with Jenny! SHe live's by me, and graduated from the same high school as me (albiet, she is ALOT younger.. I wont tell). I met her, her mom, and her adorable little baby girl!

Blizna.....SHAME on you! She has a diagnosed and you dont?! YOU have no idea what this young women has went through. She was trying to make you feel better about your twitching and you want to attack? Do you have weakness or atrophy after a year and half of twitching? Well, she does and so do I! Does that scare people? maybe. IT scares me, but I would never jump on someone to make myself feel better.

and Yes, people have twitching as a fist sign, is it normal...no, but it happens in about 6-10% of cases. Maybe there was a mild weakness but it was not noted. Look at quadbliss, that was his first. Tim (lories bro) that was his first. It may just be what gets some pals attention. I have looked at other pals on here and what they noted was twitching first. My first scare was twitching, but IN hindsight I was weak before, not clinical. Ihave no diagnosed. IT does scare me to think that some have this as first sign, but I would NEVER make someone feel bad about. HEY, maybe it is atypical...that would be great for those that have it and this may be atypical for them.

Jenny is a wonderful girl. I have a issue with anyone who has a problem with her. She should have this forum as a "safe" place to vent her feelings. I just feel protective of this girl as I care about her and pray for her daily.

And belinza, there are no main rules to any illness. Thank God for that, look at jons40! 17 yrs with als, bless God for that.

Jenny, I care for you if you are reading this and I will always be there for you if you need anything! ~ april

ps. belinxa, I do hope that it all turn out good for you!

 

[Al]

Everyone is welcome on these forums. You may disagree with an opinion but you'd better be civil about it. We don't need meanness or picking on others. Christmas is coming for gosh sakes. Remember? Peace on earth. Good will towards men (and ladies).

AL.

 

[CindyM]

I agree. We must be civil. We try to tell people before DX to relax, as anxiety makes our symptoms worse and sometimes the fear of ALS is almost more overwhelming than the disease. Beyond this, I don't think this fourm is the place to DX anybody, as we are more skilled at helping people cope after DX. This is where we shine, folks! :smile:

 

[comfortable with ALS]

Thanks april and olly

you two girls are awesome...April you are so sweet, thanks for sticking up for mr...Blinza can think iam a fake thats fine..he was such a nice person when i came on here we used to chat and he would help me out. Blinza you really hurt my feelings..april thanks again so much i wasnt trying to scare anyone. Blinza go with what your nuero said ok listen to your doc not me i cant diagnosed anybody...by the way olly Annmarie just thinks the world of you and what a sweet lady you are! well my fishy als butt has to go take care of my daughter...love you guys muah give that baby a kiss for me april. jenny benny