Back Squarely In The Rabbit Hole

[mjh82]

Hello,

Been a long time since I posted. Thankfully, a lot of the symptoms (full body twitching, occasional muscle cramps, tightness/stiffness in legs, pain, etc.) I had been experiencing had largely gone away and/or lessened significantly to a point where I thought I put all this behind me.

Fast forward to three/four weeks ago, I developed drop foot in my right foot. Felt numbness halfway down my leg to the top of my toes. A lot of discomfort in my foot that was affecting my gait. Couldn't heel walk. Diagnosed with acute foot drop by my PCP. Reflexes were okay per PCP, which was positive. No apparent reason or cause. I had a lumbar mri which was all clear. I have an EMG on Wednesday. Freaked out.

On a positive note, the numbness has been gone for about two weeks now. I've regained strength back in my foot to where I can heel walk now and almost completely back to full strength.

Obviously given everything I went through years ago, I've very nervous. Trying to hold onto hope that I've regained strength which I would think is a very good sign that this was some kind of weird pinched nerve or something. Given everything, my twitching has returned in full force (twitching everywhere - big ones and small ones) and been off the charts the past month. Before I could I always say I didn't have clinical weakness, but with this recent episode I'm beyond scared.

[mjh82]

Update: Got an EMG yesterday and was told by the testing doctor it's a localized compressed nerve and no sign of anything neuro muscular. Of course, I was relieved. What do I do today? Look at the NCS/EMG report and see some abnormalities in some of the columns of the EMG report and now I'm freaked out even though both the doctor doing the test and my PCP has said this injury was the most common nerve injury and nothing to worry about. Should heal up in time. Now I'm second guessing....this was only done in one leg......a month in....did I take the test to fast?

Good lord, this is a deep dark rabbit hole.

[Fishmanpa]

Great news! Maybe now you can start working on filling the rabbit hole with dirt ;) And while you're at it, might be best to show some respect and stay off the ALS forum :winks:

FMP

[mjh82]

I'm still struggling really bad mentally. This most recent episode hit me really hard. It feels like I climbed Mt. Everest and now I have to do it all over again. For the past 1-2 years, most of the crazy anxiety symptoms I had dealt with had largely gone away or been very minimal. I guess that's because I latched onto other anxieties to consume my thoughts and time.

I'm having so much trouble not worrying about this being a sign of a broader issue despite reassurances from my doctors that they found no signs on the EMG of this being indicative of ALS or other neuromuscular diseases. They both seem confident this will heal in time and I don't even need meds or PT. No other referrals with specialists needed.

I keep telling myself that along with the fact that my strength and gait has returned what appears to be back to normal. My walk seems normal. I can heel walk now. I have full mobility in my foot. The only symptom that I have is an occasional pain or discomfort but that is few and far between. Might just me being hyperaware of my body and scanning constantly for signs of abnormalities/discomfort.

As you suggested Fishman, I'm refraining from posting on the other forum anymore going forward as they seemed to feel this wasn't indicative of ALS and I don't want to be disrespectful. The urge is there but trying my hardest not to visit.

Now my lower back is sore and of course my anxious mind goes to this being another sign of confirmation something sinister is happening along with all these damn twitches.

This time around feels even more daunting than the first and I don't even know where to begin. I've been doing counseling appointments for the past 6 weeks so at least that's a start.

Any advice or thoughts?

[kyllikki]

Yes, one thought! I would chase for a PT script.

Problems in one area almost always beget problems in another, and PT can be magic at uncovering those issues and fixing them before they settle in for the long haul.
Take me for example. I DO have a lumbar spine issue clearly seen on MRI, and it also apparently has caused butt muscle issues. In fact, my PT said they've never seen an L5-S1 problem that *didn't* have butt muscle issues. It's just how your body tries to compensate and/or ward off pain.

Is it possible PT won't help your particular problem (sounds like peroneal nerve injury?) Yep. But it'll help shore up your whole leg and core so you don't injure it again.

As an aside, I stood up from an awkward position a while back and the front of my leg on the "bad" side of my spine suddenly exploded in electric shock/painful stabbies from the knee to big toe -- like the funny bone feeling, but in a leg, and without having bumped anything.
It took 20 min and some ibuprofen to wear off completely, but wear off it did. This is the leg that's the worse twitcher, too. So it is evidently *shockingly easy* to compress your nerves. Weirdly, I found this reassuring. It affirms that there is something wrong, but it is probably not.... that.

Best of luck to you, hang in there. I'm also in the permanent-medium-grade-anxiety soup, but from where I stand your situation sounds pretty positive.

[mjh82]

Thank you for the advice! I have a message into my doctor about PT.

Today, I woke up randomly with right shoulder pain. A dull ache. Still have range of motion but my panic is in overdrive.

My right leg feels pretty much back to normal. Walk is normal and strength seems fine.

Just when that seems to get better the back pain begins on top of twitches and now shoulder pain. My anxiety is through the roof.

I know functions lost due to ALS don't reverse themselves like appears have happened with my right foot but could all these other pains (back - low and upper, shoulder pain) be anxiety related? I'm back into the mindset of every little random ache and pain be affirmation that this is ALS.