@vbnrs4
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Victor B. Nakkache replied to the topic Delta in the forum Coronavirus (COVID-19) and ALS 1 year, 3 months ago
No, I am not worried about, I have much more important problems(moderatically progressive ALS) and fully vaccinated ,by the way I am/was a physician,so I have a different perspective.
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Victor B. Nakkache replied to the topic Oh my COVID vaccine in the forum Coronavirus (COVID-19) and ALS 1 year, 4 months ago
I can not believe some of you make such a big deal about the vaccine.
As a prior physician I firmly believe in vaccines with all the pros and cons that everything we do in our lifes.
Furthermore any of you that have a fairly fast progression of ALS,(like me)probably would agree that ALS is much more serious than worrying about the vaccine side…[Read more] -
Victor B. Nakkache replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 1 year, 8 months ago
I fully agree . Quality of life is much more important.
I am saying that both as a rapidly progressing patient and prior Physician. -
Victor B. Nakkache posted an update 1 year, 11 months ago
This maybe useful for future younger patients with very limited resources but does NOTHING for present patients.
So I don’t really agree with all the excitement about this law!! -
Victor B. Nakkache posted an update 1 year, 11 months ago
Respectfully I disagree that is so useful.
Although some ALS cases take too long to diagnose it is not always,personally it took about 3 months for me.
Regardless focusing in early diagnosis doesn’t help us,we need treatment! -
Victor B. Nakkache posted an update 1 year, 11 months ago
Although I am happy for new (younger)ALS patients to have this bill passed I strongly feel that would be much more important for all the present patients to have the other law passed(the one to allow expanded access)so we can have more time/better quality of life.
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Victor B. Nakkache posted a new activity comment 1 year, 11 months ago
Dagmar
Again I am not receiving the weekly ALS news(except when forward from one of my family members).Why not? ,I am a member of the ALS community!-
Hello Victor,
Use this link:https://alsnewstoday.com/
Scroll down, and you will find an area where you can sign up to receive ALS News Today to your email inbox.
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Victor B. Nakkache posted an update 2 years ago
Again and again I am no longer getting any news nor updates,!!
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Victor B. Nakkache posted a new activity comment 2 years ago
I am still not getting any news anymore!!
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Victor B. Nakkache posted an update 2 years ago
Again see it below
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Victor B. Nakkache posted a new activity comment 2 years ago
Dagmar,plain and simple,NO ALS NEWS
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Victor B. Nakkache posted an update 2 years ago
Again I have received no news for the past 2 weeks
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Victor – – what “news” are not receiving? I don’t understand your comment. Tell me a little more and I will try to help.
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Dagmar,plain and simple,NO ALS NEWS
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Dagmar
Again I am not receiving the weekly ALS news(except when forward from one of my family members).Why not? ,I am a member of the ALS community!-
Hello Victor,
Use this link:https://alsnewstoday.com/
Scroll down, and you will find an area where you can sign up to receive ALS News Today to your email inbox.
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Victor B. Nakkache posted an update 2 years ago
I have not received anything from ALS news for the past 2 weeks,?
I have my views and should not be censored.
Thank you-
Victor – – have you posted any comments in topics? If you have, and don’t see them, let me know and I will check it out. You have not been censored or have restrictions.
Or are you not receiving the weekly Update on Topics or Weekly News emails?
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I am still not getting any news anymore!!
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Victor B. Nakkache replied to the topic Professionals and Empathy in the forum Living With ALS 2 years, 1 month ago
I was a recently retired neurosurgeon in very good health and despite not been a neurologist I already new too much about ALS(maybe not so good),so my first guess when I got the initial symptoms was ALS which was confirmed about 2 months later by two very known neurologists.
I even saw two more besides going fo r cervical spine surgery (yes…[Read more]
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Victor B. Nakkache posted an update 2 years, 4 months ago
In my opinion the main reason for the delay is that many “famous neurologists” will not see you for months,in fact that almost happened to me.(I was able to see him sooner because of a very important connection).
Besides I firmly believe most specialized neurologists are mostly focused in diagnosis than treatment. -
Victor B. Nakkache became a registered member 2 years, 4 months ago
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Hello Victor,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]
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Hello Victor, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
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