@georgi
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Georgi replied to the topic Should I get genetic testing? in the forum Diagnosis Information and General Questions 1 year, 11 months ago
Hi Kiki, I sent mail to both Charite and the Hospital in Ulm to request NFL/tau test or at least information, none of them responded. Do they work with international patients?
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Georgi replied to the topic Should I get genetic testing? in the forum Diagnosis Information and General Questions 1 year, 11 months ago
Today my genetic professor told me in her practice sporadic always becomes transmitted to children and that chance is much higher than 50-50 like the faulty gene is more “sticky”. She also told me it hits earlier. Let me hope she is wrong. Let us hope they will find cure for the next generation.
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Kiki and
Georgi are now friends 1 year, 11 months ago
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Georgi replied to the topic Should I get genetic testing? in the forum Diagnosis Information and General Questions 1 year, 11 months ago
@David “So, is there really sporadic genetic non-familial ALS?”
Yesterday I stated something similar and my post was removed.
@Kikki Could you provide more info on how to send blood to Berlin for NFL tau. I still have a diagnose only by a single neurologist (EMG) and every mimics incl. MG was excluded. As I can still climb stairs I have no dx by…[Read more]
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Amanda and
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Georgi replied to the topic When getting a second opinion comes with risk in the forum Diagnosis Information and General Questions 1 year, 11 months ago
I think the wait time between symptoms and diagnose makes people desperate. This is the only disease that physicians wait until full blown symptoms appear. Their inactiveness is not accountable based on their belief that there is no cure anyway. If only they make 2 careful EMGs in 2 months period and compare the neurogenic changes in same muscles…[Read more]
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Georgi replied to the topic How do you define an ALS cure? in the forum Research Topics 1 year, 11 months ago
Early genetic testing to everyone and establishment of database will enhance understanding of ALS. Biomarkers as neurofilaments and MRI for positive ALS testing should replace the current diagnostics by exclusion. These kind of measures will lead to better treatment and possible prevention for those at risk.
The Italian trial using MRI to show…[Read more]
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Georgi posted a new activity comment 2 years ago
Hi Marcy, I was diagnosed by one neurologist on 15 March 2021 in Bulgaria. He works on private practice and he was the one who made my first completely clean EMG on 30 Dec 2021. So 2.5 months later he saw significant changes esp. in my calves. This doctor is a neurologist who makes a lot of EMGs by himself and he also worked in Germany. He told me…[Read more]
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Georgi posted a new activity comment 2 years ago
In my case I had all the blood tests and 2xMRIs to rule out other conditions. The neurologist was personally doing my two EMGs and he noticed the progress. My first EMG was done on 30 Dec 2020 (5 days after my twitching on both caves started). This EMG was completely clean. The second one with the same doctor showed fasciculations, fibrilations,…[Read more]
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How long between your first and second emg when it showed changes? I just had my second 2 days ago by a top neurologist in Toronto and he said all the examinations were normal. I’m having a hard time not worrying still. I’ve only been have fasciculations for less than 2 months so I’m worried I went to early. He said you can go to early and if…[Read more]
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Hi Marcy, I was diagnosed by one neurologist on 15 March 2021 in Bulgaria. He works on private practice and he was the one who made my first completely clean EMG on 30 Dec 2021. So 2.5 months later he saw significant changes esp. in my calves. This doctor is a neurologist who makes a lot of EMGs by himself and he also worked in Germany. He told me…[Read more]
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Georgi posted an update 2 years ago
@richaz Richard, before getting first ALS symptoms I was playing soccer twice a week, swimming and being physically active. I am 52, first symptoms 9end of 2020) were constant fasciculations in both calves, now spread to the whole body including face, At that time I had no many other symptoms. Currently I feel tired and week. I have also atrophy…[Read more]
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Did you get diagnosed thru EMG testing or neurologist?
I have been having all over muscle twitching for 2 months. My emg and nerve testing were normal and neurologist says no als. I’m afraid I went to early for testing.
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In my case I had all the blood tests and 2xMRIs to rule out other conditions. The neurologist was personally doing my two EMGs and he noticed the progress. My first EMG was done on 30 Dec 2020 (5 days after my twitching on both caves started). This EMG was completely clean. The second one with the same doctor showed fasciculations, fibrilations,…[Read more]
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How long between your first and second emg when it showed changes? I just had my second 2 days ago by a top neurologist in Toronto and he said all the examinations were normal. I’m having a hard time not worrying still. I’ve only been have fasciculations for less than 2 months so I’m worried I went to early. He said you can go to early and if…[Read more]
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Hi Marcy, I was diagnosed by one neurologist on 15 March 2021 in Bulgaria. He works on private practice and he was the one who made my first completely clean EMG on 30 Dec 2021. So 2.5 months later he saw significant changes esp. in my calves. This doctor is a neurologist who makes a lot of EMGs by himself and he also worked in Germany. He told me…[Read more]
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Georgi posted an update 2 years ago
@richardhasals Hi Richard: Getting the word out: The awareness should be raised by the ALS/MND doctors, however my personal observation is that the ALS niche is taken by strange kind of doctors. Wait and see approach is well established – I can see that most of the pALS are members of this forum 6 months and more prior diagnosis. I even saw ALS…[Read more]
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Georgi replied to the topic Should I get genetic testing? in the forum Diagnosis Information and General Questions 2 years ago
Hi Kiki, I am 52yo Bulgarian with strong and fast advancing symptoms started approx. on 1 Jan 2021. I am pretty sure that the developed EU countries offer gene testing payed by the healthcare system. I was working in Belgium (currently on sick leave) and still have active med insurance there. I was offered a gene testing in AZ Brussel, blood…[Read more]
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Georgi posted a new activity comment 2 years ago
Russell, do not let them label you psycho unstable. If you have physical sufferings they should be explained. I do not believe nervousness can be a cause of muscle atrophy. It is not necessary to be ALS, but there should be a sound explanation.
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Georgi posted an update 2 years ago
@mrjukebox61 Russell, waiting for full blown ALS is the common strategy of neurologists. This strategy works for them, but not for you. I would suggest that you take the chance and go to the ALS center on the earlier date. Ruling out ALS at this center would have more credibility.
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Ty Georgi, I have to get up my courage if I go. I’m scared of what they might say. Idkn , I keep hoping my neurologist is right but yet I don’t feel right. Is it my nerves ??
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Russell, do not let them label you psycho unstable. If you have physical sufferings they should be explained. I do not believe nervousness can be a cause of muscle atrophy. It is not necessary to be ALS, but there should be a sound explanation.
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Georgi posted a new activity comment 2 years, 1 month ago
Russell, If you are able to walk 2 miles and you have no cramps and you can walk on heel-toe it is very very unlikely that you will be diagnosed with ALS. I know the neuromuscular doctors mindset. They look more on the clinical evidence than the EMG. In my case EMG was indicative in all four ALS readings – fasciculations, fibrilations, positive…[Read more]
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Georgi, I got home a few hours ago . I wish I had good news. Im really on the dark n scared right now. The emg was done by another dr. He said I had one abnormality in a small muscle on the left leg which is smaller in size.he said he couldn’t get a response when he stuck needle in there.
He said the other muscles in my left leg were reactive to…[Read more]
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Georgi posted an update 2 years, 1 month ago
@mrjukebox61 Good day Russell, hope you will be diagnosed with no ALS. I was diagnosed with ALS on 15 March 2021. My diagnose was based on classical ALS EMG findings: fasciculations, fibrilations, PSW and polyphasic MUAPs (plus clean blood and MRI head and full spine to rule out any other conditions). Then I was sent to neuromuscular…[Read more]
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Georgia, thank you for your concern. I look at the atrophy in my left calf and ankle area . It really scares me. I’ve noticed this for 3 weeks now. Along with my fingers aching. I am stressed to the max. I am able to toe raise and heels. I just walked for 2 miles but I feel like I’m walking a lil funny like I’m favoring the skinny leg. My pcp gave…[Read more]
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I also taken all spinal scans n they were negative
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Russell, If you are able to walk 2 miles and you have no cramps and you can walk on heel-toe it is very very unlikely that you will be diagnosed with ALS. I know the neuromuscular doctors mindset. They look more on the clinical evidence than the EMG. In my case EMG was indicative in all four ALS readings – fasciculations, fibrilations, positive…[Read more]
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Georgi, I got home a few hours ago . I wish I had good news. Im really on the dark n scared right now. The emg was done by another dr. He said I had one abnormality in a small muscle on the left leg which is smaller in size.he said he couldn’t get a response when he stuck needle in there.
He said the other muscles in my left leg were reactive to…[Read more]
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Georgi became a registered member 2 years, 1 month ago
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Hello Georgi,
Welcome to the forum! I am one of the forum moderators and a person 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. You can also search for past topics or discussions by typing a…[Read more]
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Hello Georgi,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 lost m…[Read more]
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