I'm doing my best to keep going...

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KBG

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Mar 13, 2023
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Learn about ALS
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TR
Hello beautiful people.
First of all, I want you to know that I am ashamed and embarrassed to write here, and please forgive me for my English.
I would like to tell you about my 2-year process. It will be a bit of a long article. Thank you very much for sacrificing your precious time in advance.

I am 34 years old male. 2 years ago in January 2021 I had a twitch in my left triceps that was very hard and lasted 24 hours without any cuts. I didn't care at first, but when I woke up the next morning, I panicked a little when I saw that it was still there. Unfortunately, I found myself in that vicious circle when I did that stupid research on my own. I've been a person with health anxiety all my life, so the first 15 days were a nightmare for me. My first twitching stopped on the 2nd day and within a month it spread to my whole body, I was twitching visibly all over my body, from my scalp to my toes.

In February, I made an appointment with a neurologist and was examined. He told me that there was no problem as a result of the blood test, MRI and clinical examination, and he said that he did not need EMG. I told him that if we did not do this, I would not be able to continue my life in a healthy way, and I insisted that he do this test. Although he told me it's too early for EMG, I made an appointment for 1 week later. February 23, 2021 EMG was clean and I left the hospital relaxed and closing the issue.

My twitches have never diminished, and are accompanied by muscle spasms and very rare cramps. I now thought that my condition was BFS and went on with my life without worrying about my symptoms. The thing that worried me the most was the twitching process of my tongue. Please don't get this wrong, what I'm talking about isn't the tremors I see when I pull my tongue out and check it out. I think that the right part of my tongue is officially twitching while I'm resting without concentrating on my tongue, and rarely a part of the upper part contracts, that is, swells and falls. I guess this is spasm. These continued for a very long time and then ceased.

Unfortunately, as I continued with my life, my symptoms always progressed. So what were these advances? I started to have serious shortness of breath, there is no difficulty in swallowing, but there is fatigue when chewing. I now have numbness and cramps in my legs. My hands get tired and tremble immediately under the slightest force. For 2 years, I didn't care about anything, I was patient and waited. Afterwards, I wanted to see an ALS expert professor again and have an EMG done.

On December 15, 2022, he examined me clinically and did not see any problems and made an appointment for EMG the next day. The date was 2022-12-16 EMG was done and all the results were normal. I was left crying like a child from a stretcher. Now I could move on with my life. But when I woke up one morning, I woke up with severe weakness in my left hand, when I held something, my hand got tired in 2 minutes, it trembled and I couldn't grasp it. 2. After EMG, my tongue twitches are all over my tongue now. Thank you for taking the time to read this far.

There is only one reason me and many people like me write here, that is, this disease shows different symptoms in each person. Some start with just a twitch, while others start with weakness without any twitch. Some get clean EMG and doctors says its BFS, but then they are diagnosed as having ALS. There are those that progress very slowly, and there are those that progress very quickly. Please don't get me wrong, it's not actually catching this disease that I'm afraid of. Not being able to prepare the ground early for the conditions that the disease will create. Unfortunately, not all of us have a family to take care of him. Thank you again for reading. I share with you my latest EMG results.Respects.
 

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ALS does not present as you have described. Stop reading about what you think are other histories of ALS. They are colored by the passage of time, wishes, hopes, emotion, and lapses in memory.

If you are worried about your strength, I would see a physio and get an evaluation. It is not at all unusual to need certain muscles to be stronger because they have not been challenged enough recently, and that can affect other muscles. It is all connected. This has nothing to do with ALS.

Since you also acknowledge health anxiety, that is something that counseling can help with, that can keep you from wasting your life in suspense and worry.

Your future is worth these steps, this work. It is not productive to surf the net looking for anecdotes to confirm your fears. They can all be addressed in real life, in real time.

Best,
Laurie
 
Thank you for your answer. This was just some parts of what I've been through for 2 years. It is impossible to go into too much detail. I get the necessary support for my health concerns. There are medications I use. All I want you to know is that I don't spend my life researching things on the internet 24/7. I will have an interview with a physiotherapist and ask him to evaluate my situation.I will update here. Thank you very much again...
 
That sounds very positive, glad to hear.
 
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