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Hello
Actually, I have been diagnosed with ALS about 8 months ago,
and so far I have been experiencing the early symptoms.
Actually, I have been diagnosed with ALS about 8 months ago,
and so far I have been experiencing the early symptoms.
It is really hard to deal with such a fact; And here I am up for chatting
with other ALS patients to share our experience.
hboyajian
04-13-2007, 10:42 PM
Welcome, Omar. You have come to the right place to access information, get personal support, and share experiences. This site can be tremendously helpful and the people are great. I have found that both the search feature (to browse old posts on a specific topic) and posting questions in the forum are good ways to find information and get ideas for how to solve problems. Glad you are here, though sorry you have to deal with ALS. Holly
edna may
04-13-2007, 10:45 PM
:-D Actually, I have been diagnosed with ALS about 8 months ago,
and so far I have been experiencing the early symptoms.
It is really hard to deal with such a fact; And here I am up for chatting
with other ALS patients to share our experience.
Howdy Omar, welcome to this site. I was Dx in May of Last year. I have bulbar, I cannot speak , & walk with a walker, & have a power chair to use outdoors. That is why I love this forum with the computer as my voice, I can converse with others, & those others are warm caring , knowledgeable people, that will listen & comment on anything you want to know, Good luck. EM
Hi Omar -
Nice to meet you. I was diagnosed last November after 2 years of symptoms. Still getting around on my own. So far, so good but it is hard not to think about what's coming. I've found it difficult to make practical decisions (for example, should I buy a new car?) because I don't know how much longer I'll be able to work, drive, etc.
Glad you joined us. I hope you find the forum supportive. Lots of good info to be had here too.
Take care,
Liz
Hey Edna & Liz, I am really sad to know that lot's of people have ALS.
It seems that this virtual world is a place where we do feel less lonely and more understandable. Before, I used to think that they have achieved a lot in the medical field and now I see that they are still way behind especially when it comes to neurological problems. So far I do feel more like you Liz, I still can get around and do lots of the daily stuff by my self and find it extremely difficult to take decisions, like I was doing my Masters in Holland so I have quit to go back to my country and here I am again planning to go back to holland at the end of this month.
As for you Edna I do understand you wanting to talk and to be heard in here.
I am still new in here and to forums in general since it is not a direct way to chat
but still we will be able to communicate.
Thank you for welcoming me
Omar
Welcome Omar. Feel free to jump in whenever you like.
AL..
CindyM
04-14-2007, 12:22 PM
Welcome Omar. Glad you decided to join us. You seem to be coping pretty well...How are your friends and family doing? Cindy
quadbliss
04-14-2007, 05:33 PM
Hi Omar,
I was diagnosed nearly nine years ago. I am now a quadriplegic on a ventilator, but I still enjoy a very rich life. I have been through several stages; fear, grieving, acceptance, and finally, joy. I just wanted to try to ease your fears and let you know, life with ALS has the potential to be a growth experience.
Mike
http://mikebougher.com
Hey Hboyajian, Al and Cindy
It is true, bit by bit and I feel more attracted to this forum;
Curious to know more about the disease, hoping that one day it will be cured
and happy to meet more people.
zac111
04-14-2007, 10:08 PM
hi omar you are pretty young to have als just wondering did they do alot of other to rule out other diseases.
Hey Mike,
What an optimistic message, even though I am sad to know that you are now a quadriplegic on a ventilator; Honestly I am still new to all this and don't know sometimes what are the devices people are talking about in here. I remember that right after being diagnosed, I had read a lot about ALS, cried a lot and had lots of panics till I have decided to stop reading about it and to live ignoring the fact that I have it.
Actually I have managed to overcome my panics but never forget the fact that I have ALS, especially at night when I feel more the movements in my muscles.
and Thank you for your encouragement
Omar
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.
zac111
04-14-2007, 11:39 PM
i am very sorry for you i have not gotten a dx yet i want to know whats wrong with me but in a strange way i kinda dont want to know i have had problems for 4 months now.i have heard of a very few people that als has stoped in and even reversed so there is alwaysd hope never give up you will be in my prayers and just remember anything and i do mean anything is possible through god.
CindyM
04-15-2007, 10:46 AM
Omar-It must be difficult dealing with this if your family is in another country. Hopefully there is a good ALS clinic nearby? If so, you'll get a lot of support and coping tips from there! Cindy
I really hope that you don't end up having ALS Zac and Cindy
I guess it is really hard on both of you.
So keep us posted
I have also read about some cases where the ALS has stopped and reversed
I wonder if any of the members in here have experienced this.
Just in case anyone is wondering, we had 2 threads in 2 spots with the same title. I merged them into this one spot.
AL.
CindyM
04-15-2007, 08:30 PM
Thanks for the kind thoughts, Omar. I hope we don't have it either. Actually my doctor is pretty sure that if my symptoms don't pick up again I'll be safe. I feel good and am used to living with a body that has a mind of its own so I'm enjoying myself. How are things with you? Your DX is pretty recent, right? Cindy
Hey Cindy
Yes I was diagnosed last August,
by the way I see that you are interested in graphics and webdesign
is it just a hobby or your profession?
CindyM
04-16-2007, 08:13 PM
I work for our local town but back in 2004 I completed a program in graphic and web design so I do some work on the side from time to time. I also like to garden and intend to take it up again this summer if it ever stops snowing and raining around here! (I live in the North East U.S.) I gave up gardening last summer because it was too much. But then I met folks on this forum who live full lives, many with conditions that are farther along than mine so I decided to stop moping and get back to doing what makes me feel good.
How about you? Are you still working? Cindy
I do agree 100% with you Cindy,
I used to work as a full time Graphic Designer then I stoped and moved to holland to do my Masters, but I couldn't continue my second year because of the dx and the depression, it was really too much, but during all that time I have been working as a freelancer.
CindyM
04-17-2007, 09:58 AM
Have you seen the graphics that Quadbliss (Mike) does on his computer? It is more like painting but with a mouse instead of oils. Check out his work! There are links to his website on some of the other threads. Cindy
Mike27
04-17-2007, 10:24 AM
Hi Omar,
Welcome to the boards! Sorry you have to be here though...
We have a great community here, hopefully you'll get answers to any questions you pose.
Is there an ALS clinic in Beirut that you can attend? What are you getting your Masters in?
Cheers!
Hey Mike,
I guess it is the only place so far where I feel comfortable since I've been diagnosed.
Now I am visiting my parents here in Beirut and I am following up with a Neurologist because there is no ALS clinic. As for my studies, I was doing my Masters in Visual Communication.
and thank you for welcoming me
Mike27
04-20-2007, 03:29 PM
hey Omar,
Question for you..I see by your profile that your an active guy. Do you go hiking or camping alot around the Dutch countryside?
Reason I ask is that I read an article a while back that lyme disease is on the rise in Holland. The symptoms of LD are incredibly similar to ALS, and treatable.
Something to look at.
Cheers!
Hey Mike,
I have been tested twice for Borrelia and in the ALS clinic in Holland where I went for a second opinion, I was told that I have ALS but that the progression is quite slow; They have also thought about juvenile ALS.
What about you? I see that you were also young when you had been diagnosed.
Did they also suspect a juvenile ALS?
Mike27
04-20-2007, 06:55 PM
I haven't heard the term juvenile ALS. I have a slow progressive form, dxed in '93 but I recall symptoms back to '91. It started in my left hand and then my foot started dropping quite a bit.
I'm interested in the 'juvenile ALS', what did they tell you?
patricia1
04-20-2007, 07:05 PM
hi guys my progression is slow too since 99 Have you ever wonder if they are wrong and we have something they could have treated .I do .maybe wishful thinking Pat
Hey Pat and Mike,
ALS in general is still a mystery and the pathogenesis of the disease is still unknown; There is also no cure yet for it. Sometimes I think that the cure could be anywhere, and most of the time I even think that the only treatment is simply psychological and that ALS is the result of psychological problems we have somewhere in our unconsciousness. It is true that lots of people have psychological problems but maybe some people are stronger than others.
Recently and before being dx I have noticed a constant and uncontrolled shaking in my right leg every time I am presenting a project. Also Recently and while I was in the process of being dx I have noticed that when the green light turn on, I start crossing the street walking in an abnormal way, more like a robot. I don't know why, but I do know that I don't like the fact that people are watching me.
Have a look to the following study of the Vietnam war:
"Motor Neurone Disease (MND)
Although this is a relatively rare disease sufficient time has passed to make
observations about this degenerative disease of the nervous system. Twenty-five
deaths from MND were observed; 24 would have been expected from Australian
normative data. This gives an SMR of 1.06 (95% CI 0.64, 1.47).
Following a census of all Australian Vietnam veterans who could be located,
which showed a substantial elevation in the self-report of this disease, the
Department of Veterans’ Affairs commissioned the AIHW to validate the reported
level of MND
Clinical information was gathered on all cases, and a panel of
five expert neurologists examined this information before reaching a consensus on
the diagnosis. The study concluded that the rate of MND was not statistically
different to the Australian community norm.
This finding contrasts with a recent finding in the United States, which
investigated the incidence of MND among over 500,000 men, 280,000 who served
in the US military. The study found that veterans of all conflicts from WWII to
Vietnam had almost double rate of MND compared to those who did not have
military service.
Thus while American veterans seem to suffer from a higher
risk of this disease, Australian Vietnam veterans have a risk that seems similar to
the broader community. Similarly, results from the Australian Korean mortality
study show mortality from MND to be no different than expected."
I guess it is a good idea to start a new forum in which we start our own investigation about our own disease by listing our own thoughts, symptoms and even our phobias,
just like a brain storming, hoping that it will lead us to a a better understanding of the disease
by the way Mike here you can find a detailed information about the Juvenile ALS, JALS http://www.als.ca/_news/42.aspx
Omar
Mike27
04-20-2007, 09:06 PM
Thanks for the link Omar. I googled JALS after I posted and got that site. Very informative!
You know, your theories on the psychological angle are very interesting and something I've pondered. Stress appears to play a major part of the disease. I've talked to many PALS and most suffered a very stressful episode or moment prior to the ALS onset. Perhaps a combination of events-stress, environment or something else, together to bring it on.
But I do know, when I calmed myself down (after first being dxed) and learned to meditate and accept things for what they are, I seemed to slow the progression. I can't prove it obviously, but that's how I feel.
Pat, every time I go to the clinic, the first question I ask is "Are you sure about this?" Nice to know that I'm not the only one...
Cheers folks!
zac111
04-21-2007, 03:39 AM
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
04-21-2007, 06:02 AM
Hey Zac- hope you get great news at the doctor's office when you go on Monday! Cindy
zac111
04-21-2007, 11:52 AM
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
04-21-2007, 01:39 PM
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
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
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?
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
04-22-2007, 11:15 AM
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!
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
06-07-2007, 06:07 AM
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
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.
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
06-09-2007, 06:09 PM
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
06-09-2007, 08:42 PM
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.
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.
jimercat
06-09-2007, 11:03 PM
Well "Sam Adam"
PALEEZE! You just so happen to know a FAMOUS neuro in Beirut that can slow ALS!!!
And how can someone with ALS be "stable" for "'100 days" ?
Your next post should provide more information, explicit information if you want to be taken seriously!
Deleted the rest of what I was going to say!!!!!!
PROVE YOURSELF
Hey Sam,
Last time I was in Beirut I was looking for a good Neurologist to follow up with. Since there is no ALS specialist or clinic, I have been to a Neurologist specialized in movement disorder and Parkinson disease and he told me that he already have 5 ALS patients and one of them was even able to swallow food again after the Ceftriaxone trial, thus we have agreed to go for it as well but now I have left back to the Netherlands and I may go back for a second Ceftriaxone trial. I am curious to know the name of the Neurologist then maybe I can visit him as well once I am there.
Thank you
Omar
CindyM
06-10-2007, 05:33 PM
Sam- if you really know of some sort of treatment that helps ALS or stops it then I would like to give your the names of at least two of my Doctors who treat hundreds of patients and would jump at a cure. Why not sell to them, if you have something to sell? It seems like a much more effective marketing technique.
If you are not here to sell something, perhaps you should start by telling us how MND has affected you or someone you know. This is a great place to share concerns about the realities of this disease, and learn ways to cope with what actually happens to those who are DX'd.
It is a real disease, Sam, affecting more than the patient alone. People often feel hopeful and most are quite open-minded. But ALS marches forward regardless of what we do or think or believe. Quite a lot of people on this site have decided there is nothing wrong with accepting this reality.
If you are looking for folks who are grasping at straws you have come to the wrong place. Cindy
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