My symptoms and my worries

[Hamitic]

I'm a 26 years old male. I have some symptoms for 4 months now and I'm really scared about having ALS/MND. I have read a lot about symptoms here and I just wanted to hear more as my worries are raising.



About 5 months ago, I saw my right leg thigh shaking when I used to contract the muscle. I ignored it. A week later, I had muscle twitching: 1 day at my right hand. 1 day aty right foot. 1 or 2 days at my left hand and left foot. I think the twitching continued for a weak or two. I felt a very slight weakness in those areas after.



One week later, I had stomach cramps and pain. I had diarrhea then for half a day. Then I noticed weakness in my both legs. I thought it's just a dehydration and I ignored it.



1 months passed and I still felt the weakness in my legs whenever I was walking. With every step I felt like shaky. I couldn't stand still for long and I had to sit or walk to reduce the weakness feeling. My Neuro gave me magnesium, vit A, vit D, vit E and vit B. I startes taking the vitamins. Nothing changed.



I had an EMG, brain and neck MRI, and blood tests 45 days ago. All came back normal except vit D defecency, and a small none-specefic white matter lesion in brain that my doc said that's normal.



During the last 45 days, I still have weakness in my legs and also in my hands (first my right and now my left hand). I started twitching again for a week now (first my right leg - then left leg - then right back - some at hands). I have feet muscles cramps now when I walk too much (for example 8000 steps day).



I noticed my right foot calf muscle (where it twitched for 2 days) is slightly reduced comparing to left muscle. And an extreme fatigue when I'm trying to run for even 2 minutes that I can't continue.



And it's a week I have hand tremors and rest and a vibration sensation on my right side when I lay on my right.



My Neuro requested a 4 limb emg yesterday again. It came back normal. Even any fasciculations! I have like 200 fasciculation a day and no one where detected.



My Neuro checked my feet reflexes and said it's normal. And foot sole test was normal. She said there's no clinical weakness.



But I now how extremely I feel weak when I'm walking. How really it's really causing fatigue when I'm holding my mobile phone now. It was just feet at first. Now my hands. And I feel my right leg is actually weaker than left now. With visible atrophy!



So. I know this is embarrassing but I'm like those guys who think "what if my next emg shows als? Why I'm not feeling better? Why I feel weaker and weaker in this 4 months? Why I feel shaky when I'm moving down and up the steps?"



I have attached the emg results as I can't anlyse it. Hope to hear from you.

Thank you.

 

[Nikki J]

That was the ncs not the emg you posted. However you were told by your neurologist you had a normal emg and a normal clinical exam which should be enough for you. She trained for many years to perform exams and interpret them and related tests

if your neurologist did not suspect a neurological issue you should return to your pcp and discuss next steps

 

[Hamitic]

Thank you Nikki for your response and I really appreciate it.

All I have from the EMG is the table on the first image --which shows no fasciculation and fibrilation. The Neuro just examined four or five needles on feet and two or three on hands.

My question -that I was ashamed to ask the doc- is, 2 normal emgs in 45 days (with persistent weakness in 3-4 months) really rules out ALS or should I still wait and see (or probable follow up emg)? With all weakness feeling in legs, fatigue, cramps, twitching, etc?

I still can walk on my toes and hills (but it's harder than 4 months ago for me). Even my iphone tells my walking asymmetry and dubble support time is perfect. BUT actually I'm afraid that I don't get better, and all ALS symptoms are shown to me.

Thank you again.

 

[Nikki J]

Oh I missed seeing the table. Yes it is normal as you say.

weakness due to als should show on emg yes but you don’t even have clinical weakness. You are also 26 The incidene of ALs in your age group is extremely extremely rare. Please don’t ruin your life worrying and stop self testing before you strain something. Talk to your gp about next steps

 

[affected]

Yes 2 normal EMGs plus the normal clinical examinations are definitive - no ALS.

Whatever is happening you need to work with your doctors. Constantly testing yourself could result in injury, so don't do that.

You can talk openly with your doctor about your high level of anxiety and get help for that. It will make a huge difference no matter what diagnosis and treatment you end up with. This is really not the place for you, which is great news.

 

[Hamitic]

Nikki and affected;
I really appreciate your response.

By your advice, I came back to Neuro. She has a fellowship in neuromuscular diseases: and told me that:
- EMGs are sensitive; even before noticing the symptoms.
- twitching is just twitching. I have no clinical weakness (even I feel weak for 3 months- weaker on my right). All reflexes are normal.
- told me it's most probable caused by stress; gave me anti-deppresion drugs.

I'll update if something changes: but I wrote for those who are looking for their symptoms on the internet!

 

[affected]

That's exactly what we say in our READ BEFORE POSTING resource.
Good luck, you should stay away from here now. You post this 6 hours ago and yet are still here.
Best for your mental health now to go start healing.