• Georgi posted an update 5 months 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 of the small muscles in the calves and feet, and two small lower in calves disappeared. I walk normally but have bulbar problems – week jaw, week voice and fatigued swallowing, I understand your feelings, deprivation of sport breaks our souls, Now we need to live with ALS and focus on preserving our basic functions. I am taking 100 mg of Riluzole and just started my first 3-4 infusions of Edaravone, given at home by my wife. This process is very difficult for me, I organize everything from the Edaravone supply to the infusion and pay from my pocket for both Edaravone and Riluzole. I will try 1-2 cycles of Edaravone. As you have access to good doctors and best practices, could you or other members share you knowledge about treatment. What is your information about Ibudilast, Sodium Phenylbuterol, Tudca, Metformin as disease modifiers. Could be good if everyone share her/his knowledge.

    • 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.

      • 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, positive sharp waves and polyphasic MUAPs. Between 10 Jan and 15 May 2021 I had 8 or 9 EMGs by different doctors with the hope of mistake, however all showed the above mentioned abnormalities especially in calves. I also have atrophy on my left calf. I have weakness in hands, fatigue in arms and shoulders. My muscles start trembling after small physical activity. WRT to EMG I can even distinguish bad signals from the sound I hear. Needle EMG – during the rest there should normally be no sound. During recruitment of big muscles abnormal motor units can be heard as a sound of a helicopter. Polyphasic signals can be also distinguished by the sound. However, every person is different. Doctors never diagnose ALS only by fasciculations. If you have no other symptoms, try relax or to live with them. When I had only fasciculations I paid too much attention to them. Now I try to disregard so many symptoms with a hope that my nerve-muscle degradation will slow down its course. Bottom line – only with fasciculations do not worry too much.

        • 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 anything changes I can go back. In the meantime I’m worried sick as I’m a mom with 2 young kids I need to be here for. I’m also having fatigue in my right arm nut he checked it with needle emg and said it’s normal but you said you have that too.

          Have you officially been diagnosed or they just suspect it?

          • 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 to go to neuromuscular cenre and get prescription for Riluzole. Then I had a several EMGs done by different neurologists and they say EMGs do not meet the full ALS criteria. The most thorough and competent EMG I had was in Bulgaria by a 70 yo female doctor EMG specialist on around 20 March 2021. She found all the bad signals, put them on paper. Her conclusion was – no damage to the anterior horn cell, but let someone else interpret you the results. Yesterday I went to a neurologist in Brussel and requested a formal ALS diagnose. He made EMG, it was abnormal in my left calf and left fist dorsal. He said – you are already on Riluzole since March 2021. I can not do more fore you. If I give you ALS dx without excluding everything else that is curable it would be not professional. He recommended PET scanner just to buy time. Please do not take my case as an example. I have bad EMG signals in calves and left palm sufficient for 3-fold diagnoses. I have muscles on feet that do not respond at all. I have also atrophy on the left tenor muscle. I can not use my hands properly. Therefore I am taking Riluzole and some other supplements. Your case might be completely different. I have fasciculations accompanied by fibrilations (small fasciculations that can be felt , but not seen). My fasciculations are also constant and complex. Please disregard my experience. We are all so different.

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