A year of symptoms-new here

[Ivyn]

Hi everyone!!
Okay so a year ago I got really sick and starting having some crazy symptoms. Ended up with a neuro referral and have been seeing him since.

I'm having progressive weakness in my hands and arms and the neuro was able to "see" the weakness during his exam. Left hand is worse than right but the weakness started in them both at the same time.

Legs are occasionally weak but not all the time.

I've also had some bouts of speech issues. This also comes and goes. Some words are lispy and hard to say. But then I'll have a month where my speech is totally normal. Weird!

I'm now having twitches and shaking pretty bad in my hands but I'm also twitching all over my body.

So the weakness in my hands is pretty bothersome but all my other symptoms come and go.

I've been tested for Lyme and lupus and I have a clean brain MRI last year at onset of symptoms. I had an emg a year ago before any symptoms started (for my peripheral nueropathy) and that was clean. But that was before any symptoms started.

Thoughts? The hand weakness is the worst. I find it hard to hold my phone one handed :/.

Anyone have weird come and go secondary symptoms at first?

 

[Nikki J]

Off and on, both hands starting together and symptoms that are all over at times all make ALS unlikely but something weird is going on for sure

Has another EMG been mentioned? Is there a plan beyond wait and see? Have you seen anyone besides one neuro? What does your pcp say? Is there any kind of diagnosis or differential being pursued. Unless you are in the middle of some testing that may give an answer I think I would get another opinion

 

[Ivyn]

I also have balance issues and if I close my eyes I fall over. He also had me do some test with my hands where I tap my pointer and thumb together and I failed that.
There is definitely something going on but my neuro doesn't know what. He can't explain the weakness yet but he wants to do more testing. I'm due for my follow up actually (I just had a baby one month ago and he was waiting till after I delivered).
The speech issues are real as my hubby can notice them when it is acting up. Swallowing water can get tricky when my speech has issues. But that isn't constant either.

When I hold a magazine or newspaper now it shakes .
I'm only 32 and have four kiddos so obviously I'm not a fan of medical issues (although none of us want them I suppose).

He mentioned a muscle biopsy and testing for myasthenia gravis. We are pretty early on in the testing I guess...

 

[Ivyn]

I wanted to add that my neuro has not mentioned als (he hasn't mentioned any specific disease) but my pcp did along with ms (ruled out by the MRI) and lupus (my sister has lupus).

 

[Ivyn]

And a honest question:
I can "feel" my weakness. My hands really feel weak as well as being physically weak.

I keep reading that with als you don't feel the weakness you just have it?

 

[Atsugi]

My wife had very profound weakness in her foot, right from the get-go. Never felt a thing. The muscles just didn't go.

The come-and-go nature of your problem and the balance problems lead me away from ALS. Something important is going on. But I don't see any reason to think ALS.

 

[Ivyn]

Thank you so much for taking the time to reply .