Hey

[zac111]

hey omar thanks i hope we dont have it either.i hope you have been doing ok i go for my second emg and nerve study monday will be the second one in 4 months for me this time its being done by a speacialist he is a neru that specialises in the muscular field so i guess ill find out monday and ill post as soon as i find out anything.i hope that a cure is found soon for this horrible disease they have to find something sooner are later i just hope its sooner.

 

[CindyM]

Hey Zac- hope you get great news at the doctor's office when you go on Monday! Cindy

 

[zac111]

thank you cindy i was down seeing my kids the other day and was playing hide and go seek doing alot of running for 2 hours and ever since then my legs twitch so bad in the mornings so im a lil worrid but i guess well see.

 

[CindyM]

I've decided not to let those old twitches stop me. Last month my grandson wanted me to take a ride on the slide at the playground and at first I froze. What if I fell at the end and couldn't get up? What if my arms and legs couldn't help me navigate? But the little guy looked hopeful so up I went. And down, without incident. But I did shake and twitch for a long time after. I'll probably shake and twitch tomorrow, too, cause I did a little yard work this morning. But who cares? My body may not cooperate with me but htat doesn't mean I have to go along with it! Cindy

 

[Meg1]

Hey Zac,

When it comes to ALS it is always more conventional to go for a second opinion
and to rule out other diseases.
I was not comfortable with my first Neurologist, even though he did all the regular tests from MRI and EMG to Blood tests and lues serology. He kept on telling me to go back to my country and to my family, till I asked him once about my age and its relation to ALS. His simple answer was that because I am quite young the ALS is going to be much more faster than older patients.
Now I am following up with a special ALS center and I was happy to hear that ALS differ from one patient to another whether he is young or old.

Your first neurologist is a perfect example of why I always tell people that an ALS center is the only way to go. Even though your first neurologist apparently accurately diagnosed you, he passed on information that is dead wrong. Contrary to what he said, on average, ALS progresses more slowly in younger patients than in older patients. In fact, young age and a pure upper motor neuron presentation were the only factors associated with long term survival in a study recently published in British Medical Journal:

http://jnnp.bmj.com/cgi/content/abstract/74/7/995

 

[Omar]

Hey Meg,

My first neurologist was very weird, first of all he was not an ALS specialist and he didn't refer me to the ALS center in holland; Second, when I told him that I am going to Paris for a second opinion, he told me that I am wasting my time and finally and after telling me that the ALS will progress faster in me, I had a panic attack with breathing difficulties so I called the ambulance and they took me to the hospital where my neurologist got angry and started shouting on me for calling the 112.
Then on the internet I have found an ALS clinic and now I am following with them.
What about you Meg? are you also an ALS patient?

 

[Meg1]

What about you Meg? are you also an ALS patient?

Yes, a very slow progressor ('tho not as young as you) diagnosed in 2003 when I was 44.

 

[Mike27]

Hey Meg,

My first neurologist was very weird, first of all he was not an ALS specialist and he didn't refer me to the ALS center in holland; Second, when I told him that I am going to Paris for a second opinion, he told me that I am wasting my time and finally and after telling me that the ALS will progress faster in me, I had a panic attack with breathing difficulties so I called the ambulance and they took me to the hospital where my neurologist got angry and started shouting on me for calling the 112.
Then on the internet I have found an ALS clinic and now I am following with them.
What about you Meg? are you also an ALS patient?

Wow, Omar...You got a real winner of a neuro at first!
Imagine getting mad at a patient for calling for an ambulance. That guy should be fired or at least jacked up!
I hope you've found a decent neuro now.

Cheers!

 

[Omar]

Tnx Mike

I guess it has to do more with his EGO, anyway I am happy that
I am not seeing him anymore.

 

[sam adam]

Hello

Actually, I have been diagnosed with ALS about 8 months ago,
and so far I have been experiencing the early symptoms.

hi omar
i am new user of this site i have dealt with als people for a period of time -several years-
some people were able to stop the progress of the disease.need some info abt age and severeness of disease: beginning and progress since diagnosis and before diagnosis.
thanks.
wtg yr reply.
sam

 

[Al]

Hello Sam. I hope you're not going to try to sell Omar and others some magic potion or elixir that will stop ALS , cancer, arthritis and genital herpes are you? If you are you may as well leave now as we don't allow that type of advertising on site. Pardon my skepticism but I've seen a lot of scams and scammers since being diagnosed. And this week has been bad for them.
AL.

 

[Omar]

Hey sam,

Well I am really happy to hear that some ALS patients managed to stop the progression of the disease. Now and after reading AL's reply I am really curious for your reply to his.
I really hope that you are serious and would like to know more about you, like how and why you are dealing with ALS patients. Are you a Neurologist?

Omar

 

[CindyM]

Good eye, Omar. Usually when people post for the first time they are really anxious and personally invested in either their own or a loved one's symptoms or disease progression. To come on board and right off the bat offer some sort of promise does seem suspicious indeed. Cindy

 

[sam adam]

Hi to Omar, Al, Cindy and everybody,

1)skepticism is needed but absolute doubt and refusal of any new idea or strange experience would reflect ultimate despair and always we need hope in life.

2)I understood that Al lives in ontatrio and this is good because a person who lives in ontario had his mother diagnosed with als in Lebanon abt six years ago and she is in a stable condition. I will try to get his tel number if you would like to get contact with him to inquire about the situation.

3) It is good to know that also omar lives in beirut because it will be an opportunity to meet you in person in lebanon.

4) the thing started when a close person to me was diagnosed with als by a famous neurologist in beirut and he witnessed the progress of the disease abt six yrs ago.

5) NO ADS, NO SELLING but for everybody's info I know two persons at time being diagnosed with als that r in stable condition the first patient for four years as I told you and the case is not severe, the second patient for 100 days and the case is very severe and he seems to be stable-He is in his sixties. It'll be good for omar to meet them in lebanon.

Thanks to all of you.

 

[Al]

Yes Sam I understand. ALL people selling unconventional therapies first attack the skeptic as one who has no faith or hope. Bad tactic. We've seen it 100 times before. You think because we live in Canada we are stupid? Who is this famous Neurologist in Beirut and what is his phone number? I will phone anyone on this earth anywhere to see if there is something that will help me or anyone else that really has ALS. I am a skeptic and deservedly so. I have seen so many people taken advantage of. We have had to take off at least 15 ads for crap from this site this week. At least you have the nerve to come back. Most other scammers don't. Maybe you're not one of them but if there was a real treatment someone would be making a million dollars. There wouldn't be just one guy on a forum saying he knows 2 people helped by some treatment. Please do not insult the intelligence of people over the world that read this forum.
AL.