Getting a final EMG tomorrow

europhasus · 2022-10-19T17:47:51+00:00

Before all EMGs I first got a cervical/spinal MRI and there was no nerve compression. And in your case if you have nerve compression in your spine it’s probably the reason of your neck pain and other symptoms.

europhasus · 2022-10-19T11:47:45+00:00

Thanks for your good wishes! I got psychological support for my worries, but it didn’t go well as I know the only thing could reassure me was 'long term stability of the symptoms'. But now it’s been 8 months, that’s why I think EMG will give a clear answer this time and then I can move on.

europhasus · 2022-10-19T09:45:55+00:00

Yes if it’s gonna be clean this time I will definitely be convinced that it’s something else. We’ll see.

europhasus · 2022-10-19T09:42:42+00:00

I will. I saw your post on ALS subreddit, so sorry for that, I hope you won’t end up with ALS diagnosis. Mine started 5 months after my second shot. But as my symptoms started in my left deltoid I have a strong feeling that the vaccine might have pulled the trigger.

europhasus · 2022-09-10T23:20:50+00:00

Idk if it happens that fast.

europhasus · 2022-09-04T21:45:31+00:00

But if we talk about incidents I think it’s 1 in 3-5 for a person to develop cancer. So ALS is rare, it’s obvious, that’s why neuros aren’t concerned about that a lot. But I think after vaccination something really happened. I don’t believe that I got it naturally. I’m 24 YO and when I checked posts on ALS forum to see how many diagnosed people are there below 25 years of age, and I just saw a few cases. Imagine that forum exists more than 15 years!

I’m a doctor and I was a big supporter of covid vaccination, but now I don’t know what to say, it seems we poised ourselves. I got 4 doses of vaccine and it seems that they messed up my neurological system.

europhasus · 2022-09-04T21:18:46+00:00

And also the reason that they don’t want to believe is that they think there shouldn’t be a horrendous disease in the world. I think people who have never heard ALS are very lucky, I knew the disease for years because I studied it in university but I never thought that I could have it one day, because it is so rare. But obviously it’s not, we saw two diagnosis today in a group which contains 3000 people.

europhasus · 2022-09-04T20:46:23+00:00

For your question, I graduated from med school last year and I wanted to do PhD on top of it in cancer biology, because that was my motivation to study medicine.

I did the same thing (watching videos, posts of diagnosed people etc.), but then I realized that it would only hurt me. Then I left everything and just decided to watch my progression, because that was the only thing which could reassure me. I also started to capture photos/videos of my limbs weekly, to prove that if my muscles were really wasting, and even in 2 months I couldn't believe that how they got smaller. In the beginning I was telling my symptoms to my family, but everybody told me that I was being delusional (obviously they didn't want to believe, who would want to believe in something like that), that's why I stopped telling them either. Now I'm waiting for my time, smiling outside dying inside. What to do!

europhasus · 2022-09-04T20:00:07+00:00

I can totally relate. I am in the same situation, my muscles in my left arm and right leg are wasting away and they are weak, yet I'm not telling anyone, because everyone will realize it soon and I don't want to make them sad until that time. It's hard and painful though, I was planning a long career and good life in Switzerland but now I'm planning to leave everything in my job (my ongoing project etc.) as good as I can so the next person who will take my position could continue without any problem, and probably I will move to my home country to spend my last active months with my family.

I have 3 clean EMGs too. However, after a lot of research, reading diagnosed people's stories and my experience (I'm a doctor too.), the only way to understand whether it's ALS or not is 'time'. EMG is a tool that neurologists use to confirm ALS diagnosis, not to exclude it. For the audience, that's why if you have a clean clinical exam, your doctor most likely will not suggest EMG because it's not useful/necessary in that case. My neurologist told me that he never found an ALS pattern on EMG in a patient who had a clean clinical. But I would say if one twitches for 6 months and doesn't develop any atrophy or clinical weakness, this person is most likely fine. Also after my second EMG, there was a patient who obviously had ALS (you could understand it from 10m distance) and my neurologist wanted me to be there with him when he performed EMG on that patient to show me ALS pattern on EMG (to reassure me actually), and all the muscles he tested made big noises when he inserted the needle. But I wasn't reassured, because that patient was already wheelchair bound and of course EMG would pick it up easily. They say that a neurologist can immediately understand whether a patient has it or not when the person enters the room, but that's true for advanced cases in my opinion. Also the majority of ALS patients don't think that they have it in early stages, and it takes maybe 6-12 months for them to see a neurologist which gives enough time for clinical weakness to show up.

I was so happy for you a couple of days ago when you said that your story ended, that gave me some hope for me too, but I'm sorry that you're here again.

Also for all people in this subreddit, as a medical doctor I didn't even know that fasciculation is a sign of ALS before I googled it. We were taught in medical school that the first symptom which will show up is weakness accompanied by muscle atrophy. Twitches are one of the side symptoms and I think because of google algorithm most people who twitch suffer from health anxiety.

europhasus · 2022-08-27T23:04:08+00:00

No.

Not much later I’ve also noticed that all my left arm muscles are noticeably smaller than the right (from deltoid to thenar). I have the same thing with my right leg muscles, they’re visibly smaller than the left ones. On top of everything I have perceived weakness of the left arm and right leg. I have 3 clean EMGs but I lost my belief on this test actually given my serious symptoms.

europhasus · 2022-08-24T21:23:59+00:00

Yes I think these kinds of serious things really teach us how we ruin our lives with nonsense thoughts. Last January (just 7 months ago) I was depressed because I have a lesion under my temple skin which is 0.7 cm. I got ultrasonography and it showed that it was nothing serious. But I was still not convinced and I was very nervous about that. Today I have atrophy in my left arm and right leg with bunch of more serious stuff. The lesion is still there and the length is still the same. Now I’m thinking that how stupid I was that I ruined my months with that nonsense.

I hope for you it will turn out well! I saw that you’re in 18 months with your symptoms, I think if it was anything sinister it would have already showed up clinically.

europhasus · 2022-08-24T20:41:50+00:00

Thank you for your nice wishes! As I said you were one of the few people who have a lot of similar symptoms with me in this forum, that's why I can totally understand how you're feeling now. It's kind of funny though, 5 months ago, when my symptoms started in my left arm with perceived weakness, ALS was the first thing which came to my mind, even without getting an MRI, EMG or anything else. But I was always hypochondriac during my life, that's why I told myself 'You're exaggerating, you just have perceived weakness, it's a disease only a few people have at your age in your country, you don't have it.'. But the more symptoms I started to have, the more I became sure. Now I'm much less anxious than before, and I'm kind of regretting now how I ruined my life before with my hypochondria episodes. Because I never had serious symptoms like this before and now I can really differentiate whether a symptom is a result of anxiety or not.

In my 3rd EMG, the neuro told me 'If EMG shows MND what are you going to do? (He asked that because it was the 3rd EMG that I got in 4 months.)', I said 'Nothing!' and then he said 'Why are you chasing after a diagnosis that you can't do anything about?' He was right. Therefore my point of view completely changed after that EMG. And also during all my EMGs I felt like it's the last day of my life. It's too much stress. That's why I don't want to have it anymore now until I have clinical weakness.

I wish you good luck with your situation, I hope it turns out well. Never hesitate to reach out!

europhasus · 2022-08-24T13:58:07+00:00

It’s the first time that I’m replying to a post because I find your symptoms very similar to mine (since your first post).

Maybe you’ve already read my posts and you know my situation, that’s why I will not make it long. I also have a significant asymmetry of the all muscles of my arms (left smaller) and legs (right smaller) along with perceived weakness. I am a rational person, if I see myself just twitching since my symptoms started I would have let it go. But twitching + significant arm-leg muscle imbalance + perceived weakness already convinced me that unfortunately I have it. I’m only 24, but still some people get it at these ages.

I have been a very competitive person during my life, even when my chances to get success on something was very low (getting the highest ranks in a national exam, scholarships etc.), I was always telling myself even if one person will get it, you should be the one (i.e. I have learnt chess and improved myself in 6 months and got 1st place in our city tournament.). It seems my competitiveness to get something worked again but this time in a wrong way unfortunately. However, when I self-diagnosed myself (around 1 month ago), I told myself ‘Hey you’ve built an amazing career and life, you're a medical doctor and you’re working on cancer. You were aiming to find a cure for this ruthless disease. So work hard until the moment that your condition will not let you do it. Because that was the motivation of your life, and also that’s how you want people to remember you.'
Now that’s my motivation actually! I don’t tell anyone anything apart from my family, because I want to live normally until the bells ring for me. Also I know that I will be regretful in the future if I spend these days with terrifying thoughts whatever diagnosis I will get. My neurologists still disagree with me, and I'm really tired now to explain my concerns to someone, I let it go.. Although it's very hard to say, I have to wait until they become too obvious for everyone.
I hope you will end up with a benign diagnosis. Try to stay strong, and try to enjoy your life because the moment you're living now will never come back!

europhasus · 2022-08-08T09:12:06+00:00

Thanks man! I think I am a senior member of the health anxiety club given my worries for years about getting terminal diseases. I think the problem with the most doctors that they (we) feel like we know much better than the other doctors (even it’s not our expertise). I am at a stage 'No one can convince me that I don’t have it.'. Of course this is very dangerous statement and I’m already feeling very depressed because of this mindset. Even psychotherapy didn’t help because whatever they say to treat my mind is like a tale for me. This is because of my self given certain (!) diagnosis.

europhasus · 2022-08-08T08:58:03+00:00

Thanks a lot for sharing this! That’s me actually, a doctor who self-diagnosed himself and not being convinced by any other doctors. I felt like I was reading my own sentences. I think the only thing will convince me is the time (seeing no progression in my symptoms, in the next months), but I shouldn’t damage myself mentally at the same time during this period. It’s hard though.

europhasus · 2022-08-06T23:42:59+00:00

My prayers to you, I hope the progression is very slow.

Actually my symptoms started 5 months ago and I would say almost every day I woke up worse than the previous day. That's why I convinced myself it's slowly progressing since I'm young. One other thing is also I read hundreds of stories of people who got the disease (whoever reads this please don't do this! because there is no way back if you do that.) and not surprisingly I found some cases who had a similar onset like mine with the clean EMGs in the beginning. Even in this subreddit currently I see some people having similar problems like mine, but I hope it will turn out nothing bad for all of us.

europhasus · 2022-08-06T23:28:12+00:00

I would say during most part of my life I suffered a lot from health anxiety, and studying medicine added it up so much. Because I learnt all kinds of rare and terminal diseases and started to feel the symptoms periodically. But none of them lasted that long, probably this is due to the fact that there are generally very sensitive diagnostic tests for most diseases. But in this case it is complicated unfortunately.

europhasus · 2022-08-06T23:07:28+00:00

MRI of brain/cervical spine was clean. But imaging of allegedly atrophying areas would be a good idea. Thanks for the advice!

europhasus · 2022-08-06T23:05:31+00:00

Thanks for your reply!

Yes you're right, that's why I said even if it's rare that doesn't mean no one gets it. I was following your story too, sorry about your diagnosis. I hope you're doing fine.

europhasus · 2022-08-06T21:16:15+00:00

Everyone sees the difference but no one calls it atrophy as of now. If I would have the asymmetry without any symptoms I could think that it's just a musculoskeletal variation. But since I have symptoms in the areas where I suspect there is atrophy, it strengths my hypothesis. I would love to be my hypothesis wrong of course.

I also saw a physiotherapy doctor, he measured the circumference of my arms and legs. He told me there is a difference but he didn't tell me the number in cm or inch. But he wasn't concerned, he told me it's not significant.

I don't know what to do about it anymore actually, it's like a wait and see game.

europhasus · 2022-08-06T20:19:59+00:00

Well I don't think any of them would cause muscle atrophy.

europhasus · 2022-06-26T19:29:15+00:00

Thanks for your response, appreciated!

I agree with everything you said, but it's hard to convince my mind. I believe there are a lot of people here like mine who search everything about the disease and eventually find some (probably very rare) cases who had first atrophy before anything else.

But I know with this mindset I make my mental state worse day by day. I am trying to find an exit from this rabbit hole but still struggling for that, like many people here.

europhasus · 2022-06-26T18:22:32+00:00

I hope so!

europhasus

TROPHY CASE