27 normal emg not reassured in the slightest

[mddarr]

Hi there I am a 27 year old male

back in January my body started doing really disturbing things, here are my symptoms

- started with twitches/jerks that would move my entire body or just a limb/digit. Sometimes these are bilateral.
- fasiculations in my entire body, They are very much vermiform in nature especially in my calves
- involuntary contractions of muscles, sometimes occurring repetitively, but will occur in just about every part of my body. The most annoying are the contractions in my thighs right above the knee.

- face twitches, sometimes moving my mouth
- wake up every day with stiff hands, only takes a second to clear this up

- loss of dexterity in hands, noticed especially while playing the guitar

- weakness, objective weakness as measured by how much I can lift in the gym (was able to 60 + pushups in April now struggling to do 45) . I just don't feel the same whatsoever. Walking down stairs has become scary as my legs don't seem strong enough to support me. I stlll go the gym to work out but it is not fun anymore as I no longer feel able bodied.
- Muscle spasms, most often in the thighs which can last a second or two where the entire muscle undulates wildly.

- Sore shins the day after exercising..

- Hands seem to be thinner and I am able to see so many veins I had never seen before.

- Had a week where I thought I had shortness of breath, just seemed to have pressure on me. Did the spirometry test and it came back at 99 percentile. This seems to have cleared up for the most part.

- Lump in my throat for the past couple of days or so. Also started having throat spasms, where i feel a twitch in my throat which is really unpleasant.

- I have had a few major cramps. These are not very frequent but had one the other day where my hamstring seized up so badly it took 15 minutes of massage to loosen it up.

I have seen two neurologists who tell me I am fine. Fine is the last thing I am. The twitches/involuntary muscle contractions are constant. They drive me insane and make life miserable.

- my reflexes seem to be fine, and I can still walk on my heels (getting more difficult, my shins burn when I do this) and on my toes ( not able to stand on my toes on one foot for as long as I could when this started)

I have lost my job over this and had to move back in with my parents who are convinced that I am fine and are angry with me for making such a big deal out of this when the doctors tell me I am fine.

My first EMG on April 27th came back normal which shocked the hell out of me. I have another scheduled for August 24th.

My life has become a wretched mess over this . I hate ALS, and I am 100% convinced I have it. Even if I don't have it my symptoms make every second miserable.

Do I have ALS?? Almost undoubtedly. Input would be appreciated I suppose but I don't think I will ever be able to get over this ALS fear .

Mathias

 

[lgelb]

Mathias, if you're "100% convinced" that you have a progressive, fatal disease despite no evidence thereof and 2 neuros stating otherwise, I doubt you'll take anything from the reassurance that no one diagnosed with ALS here started posting with anything akin to your story. Nonetheless, on the off chance it will mean something to you, that is my statement to you.

BTW, "objective weakness" means seen in a medical exam, not being able to do fewer push-ups. The mind is a powerful mistress. And that is the mind that at some recent point, per your description, picked up and ran with its own non-existent elsewhere ALS diagnosis.

And since your symptoms are holding you hostage in terms of your losing a job and your independence, I would suggest that you re-read the first sentence of my post several times.

In terms of improving your life and symptoms, you can return to primary care where you can get labs to rule out rheumatologic and endocrine disorders, if not done already, and if those are negative, perhaps help for what may be psychogenic symptoms in part, fueled by however you connected your initial symptoms with ALS.

And as regular readers know, looking to diet (magnesium, iron and potassium are the first possible deficiencies I would address), stress, sleep, hydration and bodywork for palliation isn't ever a bad thing. Nor is helping those who have actual daily deficits beyond the number of pushups they can do.

Was what you were unable to do at work more physical or mental? You're not listing actual mechanical deficits that I can tell.

Like the film says, "Get busy living or get busy dying."

 

[Clearwater AL]

Let's review your situation.

1. ("I have seen two neurologists who tell me I am fine.")

Are you going for 3?

2. ("I have lost my job over this and had to move back in with my parents who are convinced that I am fine and are angry with me for making such a big deal out of this when the doctors tell me I am fine.")

Well... it looks like they agree with two highly trained and educated Neurologists.

3. ("My first EMG on April 27th came back normal which shocked the hell out of me.")

The neurologists weren't.

4. ("I have another (EMG) scheduled for August 24th")

Being that you lost your job... who is paying for that? Just curious.

5. (" I am 100% convinced I have it. Even if I don't have it my symptoms make every second miserable.")

6. (Even if I don't have it... )

I think you know.

If your hope for relief is that you can qualify for Social Security Disability Benefits you'll need a diagnostic code... from a Neurologist. You've gone through two.

I hope some doctor convinces you that you don't have ALS. But, helps you address the real issue you suffer from.