Things have got worse!

[Mike001]

Hi everyone, I'm mike, 26 year old male. Posted once previous. I recently went and had an NCS and an EMG test done on my right leg and right arm. The NCS didn't pick up anything sinister (from the burning I'm getting) and the EMG didn't even pick up anything either (from the twitches I'm getting). Now I've had twitches around my body for a few months but it wasn't happening when the EMG was being done on my calf. Is that why it wasn't picked up? The line literally didn't budge so how could they tell whether the twitches I was get were benign or not?

I'm sorry for all the questions, I'm just lost at the moment and have no useful sources of information, apart from on here.

It's gotten a lot worse since my EMG and they aren't big thumping twitches that I've had a few times over the years, these are still the little ripples in my skin that rapidly move up and down my calves that I can barely feel. My 3 toe was where everything started then into my right calf, then a month or two later went into my left. It's also twitching under my feet. It's non stop.

Now I've woke up today and there is a pretty powerful twitch in my right calf that's staying in the one place moving repeatedly. I've calmed myself down with previous twitching because it seemed it would stop with movement (as far as I could see), but now this one is persistent regardless of me moving my leg or not, it just carries on and I read that that is an indication that it's not benign, is that true?

I know that burning sensation isn't a typical sign of MND but I have saw a few posts where people have suffered from peripheral neuropathy or small fibre neuropathy that had ALS. I'm just so confused and scared and I'm not getting any help from my Drs. I'm going to start taking antidepressants to help me out and try to stop some of the pain from the burning and the crawling feelings I'm getting. It's reducing me to tears the pain, it's got worse in the last 3 weeks where it's on times unbearable. It started in my feet, then travelled symmetrically in legs, now my back, chest and going down my arms. It's a feeling of like burning and freezing at the same time, like when you put your foot in a boiling hot bath. I know anxiety can cause a lot of symptoms and I know I'm anxious, I just know that this sensation is something that is progressing and it seems the Fasciculations are as well.

Had all bloods checked and were fine. FBC, B12 and folate, Thyroid, no lymes. etc.

MRI of C-Spine and Brain - Clear of lesions.

Please, if anyone has any ideas as to what it could be if it's not the start of ALS, please feel free to say. Thank you in advance, and sorry to be an annoyance.

 

[Atsugi]

I reviewed your post and your symptoms don't look like ALS to me.

A few weeks ago your neurologist reviewed your EMG and said "not even a chance of ALS."

Before that EMG, your posts here were reviewed by several VERY smart people with much experience in ALS, and they told you that you should be looking for something else, not ALS.

You've asked us for any ideas as to what it could be. But we must focus our time on people who are actually dying from ALS. If we were to begin diagnosing other diseases, we would quickly fill up with general health questions and non-ALS patients. This is not a general health forum.

Your doctors are already on the case! You need to listen to them. Or, if you don't trust them, get another doctor.