Could this be anything else than ALS?

[DanielN]

Hi
I am 18 years old High school student. It is Like 3 months when my first symptoms has begun. I had a significant weakness all around my body after a flu. I could do everything but it was just hard to do and I was very slow.( I know that this type of weakness has nothing to do with als but I just wanted to start from beginning.) So I went to a local neuro and he performed an emg. He said that I have some trapped nerves or whatever and it can happen from long sitting. Well I told him that I am an active cyclist so I don't think so.

He then said I should go to a hospital. They did a head MRI, spine MRI tons of bloodwork and urine tests and everything came back normal. Even some metabolic blood work which takes 4 weeks to get the results. And it was normal as well.

From 1 side I was happy that everything seems fine but from other it didn't solve my problems. When I finally came home I started noticing muscle twitches all around my body. I don't know when they started but I could easily notice and see then under my skin. Then I started googling my symptoms and everywhere where I looked I just saw ALS. It scared the hell out me but I was trying to be calm because it could be something else because in fact I have just twitching and nothing else.

As I said I am an active cyclist and a long distance on a bike is nothing for me. Few days after the hospital visit I went on a bike and after like 7 or 8 miles I just couldn't go anymore further. When I got off the bike I could barely walk and I had to sit down. My muscles where tired like I was cycling all the day without a break but it was just 15 minutes maybe. The way back home was even harder because it was just hard for me to push the pedals. On the next day a terrible soreness had come.

Oh god it is so long I will try to make it shorter. So I went to another hospital another 2 MRIs (head and spine) and another blood works. Everything okay. The problems with muscles continued and I got really tires when walking long distances and then a terrible soreness comes next day. I also noticed random muscle jerks, they ar not very visible (thank god) but definitely awkward. The I started tripping when walking upstairs(Its not every time but it is noticable) and dropping items (also not every time but I have never used to drop items like this, multiple times a day)

This is not getting under control anymore and my fear from als was much bigger. Everything I wanted is to rule out als. So I decided to go to only 1 als specialist in our country. (There are just 100 people affected with this terrible disease so it makes it even harder to diagnose and it it very rare here). So he performed an emg and told me that there is something going on with my lower motor neurons (He wrote small LMN lesion into my medical record) He then said I should stay here in the hospital for treatment . He also tested my reflexes and said they are kinda brisk. It was this moment where I lost all my hope because everything what I was told is related to als. But now after few days after emg I was just working out a little bit and my left thigh seemed to have less muscles than my right. So I tried to measure my left thight and it was smaller to right. When I watch closely to them I can spot the difference. So this means atrophy right?

My question is can this be anything else than als? I lost all my hope , I am in a very bad mood right now, I stopped cycling, working out and everything, and everything what I am doing now is searching the internet for some alternatives. So is this how als progresses or can it be something else not life threatening? Thank you for your time reading or answering this

 

[DanielN]

Well I thought this site will be much more helpful. I saw Lot of posts from young people Like me or even younger ones with more Like anxiety problems than als symptoms and there were Lot of answers. I think I may have a serious problem because there are no other medical examinations left. They ruled out everything but my problems are getting worse very slowly Over time. I think I will be One of the very rare cases of als in my age :/

 

[Clearwater AL]

DanielN, you wrote...

" I went to a local neuro and he performed an emg. He said that I have some trapped nerves or whatever and it can happen from long sitting."

The neurologist apparently was not concerned about ALS... in the slightest.

Dr.Google has you in flurry. Do yourself a favor and stop seeing him.

Then you wrote,

"I think I may have a serious problem because there are no other medical examinations left. They ruled out everything.

So... who here can help you if highly trained physicians can't figure it out?

For note... (But for an 18 year old your Thread was very descriptive, not a bad thing, but it was too long for many members here struggling with ALS to read. Little details unrelated to symptoms lose some folks.

Maybe others members can wade through your long Thread and pick out something they can add too.

 

[Nikki J]

You went to the ALS specialist who examined you, did tests including an EMG were told you had some kind lmn issue and to stay in the hospital for treatment. What treatment did you receive? Are you still in the hospital? What did the doctor say about ALS?

A small lmn lesion is not the way an ALS EMG is described here. Your doctor's comments and explanations should give you much more information. If he had said it is ALS you would not be asking and guessing here

What does it sound like? Post viral syndrome which does not always show on tests and can last months. But your doctor has the answers you seek, yet you did not share any of his conclusions

 

[DanielN]

Wow thanks for your quick response Docks ruled out ALS and told me that Lot of stress can cause this sometimes. They also noted post viral syndrome so I think I should trust them but After this relief another nightmare comes. I am about 40hrs After lumbar puncture (Spinal tap) and I dont even think About my symptoms. It was the worst experience in my life and I have terribe back pain right now unable to Walk straight, do big steps turn my head down or upside completely. Is this normal?

 

[Nikki J]

Some back soreness and a mild headache are not unusual. What you describe sounds different than the problems seen if you have a leak of spinal fluid after ( totally fixable) which is severe headache and vomiting. Please check with your doctor.

Yes trust your doctor who did the tests and said no ALS

They ruled out ALS so I am not sure why you came here to begin with but happy to hear it