Well...do I?

[richwill]

I'll try to keep this as brief, but thorough, as possible for the kind members of this forum. Here's my story:

Started having muscle twitches, mainly in both legs, but also occasionally in upper body 2-plus years ago.

Around August/September 2014, I started walking with a bit of a limp, but without pain. The next day after a long walk, I would have soreness in my right calf, which led me to think it was a muscle strain, no big deal.

Had a checkup on Nov. 10, 2014 and mentioned it, but didn't seem like much, so monitoring was recommended.

Nov. 14, 2014 - Went to PCP with pain in back of left leg below hip.

Feb. 9, 2015 - Referred to orthopedic doc. Right leg seemed to have gotten better. Left leg diagnosed with bursitis. Did home exercises which alleviated the pain but the muscles there remain week.

[At some point before the next appointment, I notice the right leg thing has reappeared and find that I can't stand on my toes on that side...can't even get my heel off the ground. No pain, no numbness, no tingling.]

Oct. 26, 2015 - MRI done on left hip showing some muscle swelling, and on lumbar spine showing slightly bulging discs but nothing serious. Ortho doc recommends seeing an orthopedic oncologist, which just doesn't sound right to me. I get a referral from my PCP to see a neurologist instead.

Early Dec. 2015 - Nerve conduction/EMG done. Shows definite nerve damage on right side but none on left. Diagnosed as sciatic nerve compression, despite still having no pain, numbness, or tingling. Prescribes physical therapy.

Mid-Dec. 2015 - Follow up with neurologist. She notes increased strength in foot and ankle but I still walk with a painless limp on the right and can't stand on my toes. Referred to neurosurgeon to rule out spinal surgery.

Jan. 6, 2016 - Neurosurgeon sees nothing on MRI to warrant surgery.

Jan. 8, 2016 - Another freakout visit to the neurologist, who remarks that my strength is still improving, and that I don't present as someone with a degenerative neurological disease. Reflexes are pretty normal, no hyperreflexia. No fasciculations noted. Right calf just slightly smaller than the left. Referral to see a neuromuscular expert at Wake Forest in NC. Scheduled for second EMG on 1/13.

To sum up: I've convinced myself that she's wrong, that I will get an ALS diagnosis at some point. For several months now, I've had the right-side limp without pain, numbness, or tingling. I've also had weakness in the left leg that manifests mostly when I'm climbing stairs. The left leg wants to buckle, especially if I'm carrying something up stairs. (Perhaps it's struggling to compensate for the weak right leg.)

I've also had 5 weeks of PT (3-4 times per week) with no improvement in the worrying symptoms I mentioned above. I'm fairly unsteady balancing in the shower due to the weakness in the right leg. I also think I've noticed slurring in my speech and fumbling for words the past 3-4 weeks, but I recognize that my nervousness may be making me hypersensitive to every little thing. No one else, including my wife, has noticed anything different about my speech.

Still no pain, except a sore right calf after walking or PT.

I will report back on my second EMG and after I visit the neuromuscular expert. In the meantime, any words of wisdom from the wonderful members of this forum are appreciated.

I probably don't have to tell you that I'm making myself sick with worry.

Thank you very much for your time,
Rich

 

[richwill]

I will also just add that ALS did not cross my mind until an internet search led me here, and I read this from the sticky at the top of the page:

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen.

With an internal scream of "That's exactly what I have!", my anxiety level shot through the roof. Serves me right for reading the interwebz.

 

[Nikki J]

Good luck with your appointment. Positive things improving strength is not what happens with ALS. Your first EMG apparently did not show ALS. Others are not noticing speech issues. Usually someone else comments to you first.

There are of course other things that will cause sudden loss of a muscle function. Sorry the sticky scared you. Let us know what happens at your appointment

 

[Atsugi]

Rich, Nikki is quite smart on these things.

Your symptoms don't really add up to ALS. As your first EMG suggested nerve compression, that explains a lot. And apparently the neuro didn't see signs of ALS on the EMG.

So far, so good. Don't jump ahead of the doctors. Let us know how it goes.

 

[richwill]

Thank you, Nikki and Atsugi, for your replies.

Just a little clarification on the increased strength thing. I've got good strength pushing/resisting against the neurologist's hand with my right foot and leg. (She even said, "You're strong!") I can do the right calf raise while seated, though it does fatigue pretty quickly and the right calf stiffens and feels like it wants to cramp. It's just that whatever muscle/nerve bundle it is that controls a standing calf raise doesn't work - can't get my heel off the ground at all.

And that same weakness makes me walk funny. It used to be that the limp would only kick in part way through a medium-to-long walk, then seemed to get better with rest. Now the limp is there all the time, though it's not what I would call a drastic limp. I also have...I don't know if it's a foot drop...but a heavy step on the right side because I don't have the usual motor control. Also can't wiggle the toes on the right as well as I can on the left. They do wiggle some though.

I realize I need to get more specifics from the doc on the next EMG. I didn't know what to ask last time, and ALS wasn't on my radar at the time either. In other words, "What specifically are you seeing on the EMG, doc, that points (hopefully) away from ALS and more toward compression?"

Should I at least be encouraged that the first symptom evidently showed up 14-15 months ago and there are no obvious signs of progression to other parts of the body? I know ALS cases progress at different rates.

Anyway, thanks for letting me think out loud on here. I'm certainly not looking for an online diagnosis one way or the other, but your input is most welcome.

 

[richwill]

I'm a 46-year-old male, by the way. Forgot to mention before.

 

[Atsugi]

Yes, this is a good question to ask the neurologist: "What specifically are you seeing on the EMG, doc, that points (hopefully) away from ALS and more toward compression?"

You asked: "Should I at least be encouraged that the first symptom evidently showed up 14-15 months ago and there are no obvious signs of progression to other parts of the body?"

Yes.

 

[richwill]

Update:

EMG on 1/8/16 showed that I've deteriorated from 1.1 to 0.8 on the right (S1 value, I think?). Neurologist says there's a definite obstruction of some kind between the knee and hip. In addition, the left now shows something abnormal. I'm picking up the actual report today, so I'll have more specifics then. She states that there is some kind of underlying chronic condition or disease present, but doesn't know what. No fasciculations or spontaneous movements were noted, and no hyperreflexia. Knee reflexes were "pretty good" on both sides, but not much of a reflex present in either ankle.

My inner right calf is tight, sore, and tender to the touch for the past couple of weeks, and I think I see increased tone (could be my imagination). I don't really feel pain there unless I apply light pressure to it though.

Brain MRI scheduled for tomorrow and appointment with a hematologist-oncologist on Thursday. Pelvic MRI to come, as well, and still waiting for appt. with neuromuscular specialist.

Sooo...I continue to freak out and expect a devastating diagnosis of some kind soon. The neurologist says the EMG points away from ALS, but she's also noncommittal because she doesn't know what's going on. Which is what you love to hear from your doctor, right?

Thanks again for reading.

 

[Green Queen]

Hey Rich.
Our imagination is our worst enemy at times.
The doctor may be noncommittal but saying it points away from ALS is awesome.
All the best for tomorrow.
God bless, Janelle x

 

[richwill]

A summary of the "high" points from my last EMG (couldn't figure out how to scan it in):

"Motor conduction normal in R Tibial but outside normal range in R Deep peroneal (Fibular) - EDB study. Amplitude was reduced for ankle stimulation.

F-wave study normal in R Tibial but outside normal range in R Deep peroneal (Fibular) study. F latency was increased.

R H-Reflex was not well formed.

Needle EMG study was abnormal in R. Tibialis anterior, R. Extensor digitorum brevis, R. Tibialis posterior, R. Gastrocnemius (Lateral head), R. Vastus lateralis, R. Iliopsoas, R. Biceps femoris (short head), L. Vastus lateralis, L. Iliopsoas, L. Tibialis anterior and showed presence of ch [chronic, I think] neurogenic changes.

This is again a very abnormal study, indicating the presence of reduced amplitude of the right CP and Tibial nerve responses. As compared to the previous study performed a few months [actually about a month], there has been a further decrease in amplitude of right CP and slight improvement of right Tibial nerve response. The right H-reflex could not be obtained today. EMG again showed ch neurogenic changes in several muscles listed from L2-L5-S1 radicles bilaterally. No acute denervative changes are seen. There seems to be a possibility of diffuse process involving the Lumbo-Sacral Plexus. MRI of pelvis is recommended. Etiology unclear at this time."

There are several number values that I will leave out for now but under the Needle EMG summary, every muscle tested has the following remarks: IA - N, Fib - None, PSW - None, Fasc - None, H.F. - None, MUAP Amp - Large amp rapid firing, Dur. - N, PPP - N, Recruitment Pattern - Reduced.

The only exceptions to the above are L. Gastrocnemius (Lateral head) which for MUAP Amp shows "N" instead of "Large amp rapid firing" and L. Extensor digitorum brevis which also shows "N" for MUAP Amp, and "N" under Recruitment Pattern.

Doc thinks this points away from ALS, but she doesn't know what it is, so I couldn't help but want to try to get input from you folks here too.

I can include number values if helpful, but I didn't want to clutter up an already long post.

Thank you in advance for any input.

 

[richwill]

By the way, still no pain, numbness, or tingling. Still have only one muscle that's "failed" as far as I can tell, and that's the one that controls the calf raise on the right side.

 

[Nikki J]

The majority of your abnormalities are in your ncs not the EMG. The NCS is usually normal in ALS. Everything written before needle EMG is the first section is talking about the ncs as is everything before EMG again showed in the second part. Your eMG did not show denervation which is the major finding in ALS. The findings on the emg seem very nonspecific and Not worrisome. Your doctor needs to correlate exam and ncs findings make a plan or refer you but nothing looks like ALS and the ncs looks like something else is going on
Good luck. I am glad your answer is elsewhere

 

[Atsugi]

Pay attention to Nikki's post about your EMG/NCV. She knows that stuff. That's good news for you, Rich.

I personally can't read those things. But I did notice it doesn't look like any of the positive ALS EMG's I've seen in the past. Like Nikki, I think you're looking at a completely different disease process, not ALS.