A first time poster who does not have fasciculations but now clinical weakness

[Ann P]

Hello community,

Thank you for your kindness in reaching out to help. Believe me, it’s very much appreciated. In contrast to an episode of fasciculations about 20 years ago that eventually disappeared (with a normal EMG + NCS), this time I have NO fasciculations - that I can see or feel although the location in the upper thighs + buttocks is problematic - but instead muscle weakness diagnosed as right foot drop.

The first symptom was: walking resulted in strain in the inner muscle for the right leg that connects my thigh to my pelvis + lower back in late FEBRUARY 2021. Noticeable loss of balance but still not grossly abnormal.

At onset there are (or were) three confounding variables: (1) This occurred right after I tore the meniscuses in both knees leading to knee pain + perhaps tingling in both lower extremities + feet. (2) An MRI to diagnose the knee found an unidentifiable lesion in my lower femur with the differential diagnosis metastatic cancer. A biopsy was benign. Repeat MRI due. (3) Symptoms also began right after my second covid vaccination. I plan to soon get a booster.

The orthopedist could not explain the difficulty in walking but hypothesized the torn meniscuses could impact balance. My earlier neuro for the fasciculation episode informally indicated potassium channel irregularities appear to lead to nerve hyper-excitability; she is no longer practicing. In APRIL 2021 I saw the neuro at that practice who specializes in neuromuscular diseases. Reported symptoms included both my lower legs + upper leg - hip muscles but he appeared to focus on the lower extremities hypothesizing that my tendency to cross my legs resulted in peroneal nerve damage.

CLINICAL EXAM: Mild curling of right toes. Decreased bulk of right EDB

MOTOR NCS STUDY (that focused on peroneal nerves + tibial): “remarkable for mildly reduced compound muscle action potential amplitude on the right when compared to the left yet unremarkable and symmetrical when measured from the proximal TA muscles. “

SENSORY NCS STUDY - MINIMAL F WAVE LATENCIES - H REFLEX: Unremarkable

EMG: Unremarkable

LUMBAR MRI: “There is mild broad-based disc bulge at the L4-L5 level without disc herniation or spinal stenosis. Otherwise normal lumbar spine MRI. No findings to explain the patient’s neurological symptoms."

The neuro indicated all findings were normal and did not suggest a followup. In JUNE 2021 I finally had an PT intake exam. The PT after extensive measurement that in someways is broader than the neuro clinical found weakness on my right side involving the hip muscles (glutes + hamstrings etc.). At one point I had total muscle failure during the exam. Unable to lift my right leg when supine. Once rested at home it was seemingly fine. Now testing, 3 months later the muscle fatigue is also immediate.

I did not continue with PT since the suggested exercises led to extreme muscle strain in the muscle closest to my pelvic bone - which along with back muscles already appeared to be “over-exercised” from simple walking.

Acupuncture + perhaps time (knee pain resolved) resulted in the lower leg paresthesias disappearing. The difficulty in walking + slight balance problems remain. I am open to a diagnosis of a functional disorder (perhaps from the knee pain + anxiety over the knee lesion). Wanting to see a more “holistic” neuro I - on my own - selected one who specializes in neurophysiology which perhaps was a mistake.

Delays in scheduling led to an appointment in SEPTEMBER 2021. He performed a limited clinical exam that did not include reflexes, although I reported and we discussed new intense muscle tension primarily in my upper left arm. I also did not mention ALS and, in fact, was not particularly thinking about it at the time.

His clinical exam found mild right foot drop. Noticeable when I stood on my heels. I could see what he did - he pointed it out to me - at the time but frankly no longer do. He did not see any weakness in my ability to control my thighs using a common clinical measurement. Based on the pattern of the now-disappeared tingling (in my lower legs) he suspects radiculopathy and wants to himself read the MRI disc. An appointment for that is scheduled for OCTOBER 2021.

While it’s a positive to now have someone tell me: Something is Wrong, now I’m really worried. Frankly I’d rather have fasciculations without weakness than weakness without fasciculations (that I can see, which might be difficult given the location).

Neither of these neurologists have done any blood tests. I saw my rheumatologist who is running a panel that will include Lyme + autoimmune. (During the pandemic I spent a lot of time in deer-tick invested woods + there’s a strong genetic history of autoimmune.)

I hope the above history is not too long. Now for the questions, if I may:

QUESTION: Broadly and unanswerable, how worried should I be? I like neuro TWO (but neuromuscular issues are not his speciality). I could return to neuro ONE for a repeat EMG? Or is it reasonable to simply schedule a comprehensive exam at our local ALS clinic? I called the clinic at Georgetown University and an intake person is to contact me next week.

QUESTION: I would like to celebrate the normal EMG and move on with my life. Actually that’s what I’ve done for the last 6 months but my perception is the walking difficulty is slowly progressing. Not in outright ability but in the apparent associated muscle strain which is what I feel. Periodically there is mild sensation in the buttocks that could be cramps certainly not sustained pain. From six months ago, I now measure atrophy in the right thigh.

I’ve read the introduction sticky and grasp that EMGs identify weakness before it is apparent. Still I have the question could it have been done too early? Absent the associated muscle strain my walking difficulties would not yet be apparent. Perhaps even to myself. There is no walking failure. Although I suppose I have had leg-lift failure that could have otherwise gone unnoticed. Could the April EMG not have captured weakness identified by the PT in June that I also perceived based on healthy muscle strain starting in February?

QUESTION: I also see that the EMG need not focus on the problematic area. The EMG examined 8 muscles in each leg: Vastus lateralis - tibialis anterior - peroneus longus - gastrocnemius (medial head) - semitendinosus - gluteus maximus - lumbar paraspinals (low).

The selected muscles reference some located in the upper leg / hip muscles but the neuro wrote: “There is no clear electrophysiologic evidence of mononeuropathy, large fiber polyneuropathy, myopathy, lumbosacral plexopathy, or lumbosacral radiculopathy noted in the bilateral LOWER extremities at this time.” All of the needling was done in the LOWER leg. So it is hard not to question, could not selecting the right muscles make the EMG not definitive?

Like many who come before me, I apologize for the length. Feeling adrift, I appreciate any observations and your advice for what I should do next. Walking for exercise is both my love and an integral part of daily life. This means I’m aware of the muscle strain on seemingly compensating muscles every time I move, with at times those muscles in pain. It’s hard not to be anxious, as those who’ve come before me have found. Writing to THIS clearly knowledgeable and thoughtful community appears at this stage to be the best path.

Ann P.

 

[lgelb]

You answered your own EMG question. The hallmark of ALS is specific abnormalities in muscles that the person perceives as fine. The EMG was "definitive." They wrote about what they needled because that is how medical documentation works.

I can't get excited about "foot drop" [not a diagnosis and a subjective feature] "diagnosed" [sic] by a "holistic neuro" given the backdrop of the EMG and MRI. If it were me, I'd find a PT that was going to help me assess just how much improvement PT could bring. It's unlikely that whatever you have is so unusual that no PT will help. But it has to be the right PT. So it helps to start with the right orthopedist.

So I'd do some networking, reading, etc. and find the right combo. You haven't presented any indication for a repeat EMG, but if a competent specialist sees one, s/he will say so.

Best,
Laurie

 

[Ann P]

Thank you, Laurie, for reading and for your reply.

Like you, I’m not concerned about the “foot drop.” I had noticed my right foot catching months ago but its improved. The second neurologist hypothesized 3 scenarios: (1) now-resolved knee pain leading to a sensory nerve response resulting in a temporary weakness (the foot) that improved over time … (2) peroneal compression ruled out by the EMG… (3) radiculopathy.

Again like you, I suspect it’s not radiculopathy. That the second neuro’s re-reading the MRI next month will not find it. Per the MRI I have a congenitally-wide spinal canal. That said, his neurological sub-speciality (neurophysiology) includes an expertise in using MRI’s and EMG’s to diagnose conditions, that include ALS. Like you, he apparently considered the EMG “definitive” although not entering his office thinking of ALS I didn’t ask the questions I did here. I will during the second visit.

Although I’ve been trying to deny it, the difficulty in lifting the leg is worsening. Probably the balance also because my forearms are increasing covered with senile purpura apparently because I manage to hit the them when I careen into doors due to the poor balance. I should have mentioned that I’m age 68. Prior to February 2021, I was very active with great balance.

I only turned to ALS mentally after the second neuro saw any weakness, even if a residual remnant. What confuses me is WHY both the PT and I see muscle weakness in the hip (muscles including the hamstrings, glutes) to the point of outright muscle failure when fatigued. But that does not show up in a standard but briefer clinicalneuro exam? THAT is what then helps this uncertainty.

That the weakness is markedly on ONE side per the PT really concerns me. Unfortunately the PT will not be much help. Her exam was skilled. She indicated for someone of my age (again, 68) that weakness takes a long period to resolve even with focused exercise. PT sessions would not help that process along. She had no interest in diagnostics. It never occurred to me to bring the original orthopedist into this again. To ask him to focus on more than the knees.

I haven’t seen my wonderful PCP since the PT exam. In reading some of the posts, I see reports of individuals receiving much more comprehensive examinations, for example including basic bloodwork that neither neuro suggested. That many report second EMGs with group members also pointing to those as “confirmatory.” I’m trying not to “doctor shop” but finding that right combination of providers a challenge. Leaving me increasingly with questions and concerns.

The very skilled acupuncturist (originally trained in China, both in medicine and acupuncture) I saw said she thought multiple conditions were in play; I suspect she's right.

I can accept this may take some time for this to resolve, if ever. That much is never diagnosed. My purpose in posting here was to close the ALS door (to the extent possible). That I might not be able to see fasciculations given the location crossed my mind. I sure don’t feel them.

Since I have the call into the ALS clinic I’ll see what the coordinator thinks. Alternatively, make a follow-up appointment with the original neuro who is a neuromuscular specialist. Wait for the results of the rheumy-ordered blood tests that I suspect will be negative. Consider your idea of a revisit to the orthopedist.

Once again many, many thanks. Frankly reading your post helped A LOT. I really do not want to re-visit ALS. It's a challenging disease. I am very impressed and humbled at those here who take their hard-won personal knowledge to help to people like me.

I went thru the ALS concern-door many years ago when then-existing fasciculations matched up with an EMG that wasn't fully clean and led to 3 weeks of uncertainty before I could finally see the referring the neuro. In that case, temporary compression led to what is now permanent atrophy and weakness - in a thumb. That I never at the time noticed. Carrying my then 4-yo daughter on my hip as a geriatric mom wasn't working for my body.

From that experience, I simultaneously appreciate the power of an EMG (even though I questioned in my post) but then also how realize how easy it is for conditions or actions to result in permanent nerve damage with perhaps my tendency that might be genetic towards nerve hyper-excitability a personal risk factor.

Best,
Debra

 

[affected]

ALS doesn't usually start in the hips but distally.
Please do see your doctor and work through your concerns, I think that is about all we can say and I hope you get answers soon.

 

[lgelb]

I'm not sure why you think I said there could not be radiculopathy. Not all radiculopathy shows up on EMG. But ALS (a motor neuron disease) does.

Also not sure what you think "nerve hyperexcitability" is, that would be genetic but not seen on NCS, but irrelevant in terms of ALS or anything like it.

It is also not unusual for a more extensive PT evaluation to illuminate weakness that a brief neuro exam does not. The whole idea of PT eval is to find treatable physical deficits -- rather different than looking for neurological pathology.

To get "basic blood work," your best bet is a PCP, not a neurologist. And that would certainly be the person to stay in touch with overall.

Anyway, you are right that I see no reason to revisit ALS. I hope you don't, either.

 

[Ann P]

Thank you for your kindness. That first reply echoed by another poster HELPED. I'm no longer thinking of ALS. And won't pursue the evaluation.

About the radiculopathy, I was being pessimistic about getting a simple answer at the next neuro appointment. Radiologists do misread MRIs, with the neurologist who specializes in using MRIs for diagnosis and who will take a look at it in October perhaps more skilled. The "nerve excitability" is not a neuro disorder but what was what my original neurologists proposed with this neurologist echoing her. The only direct measurement for potassium channel functioning is both invasive and painful. There can be a familial tendency, with two members of my small family now having similar issues.

I suppose a hyper-nerve response paired with even "mild" spinal issues could be a working hypothesis. Most don't end up with paresthesias (and temporary foot drop) after typical meniscus tears. Or nerve and muscle damage after carrying their child a not unusual amount. Perhaps those mild L4/L5 bulges per the radiologist (back injury about 4 years ago) led to problems today. Like I said, I'm now 68 years old and due to covid I've spent an awful lot of time sitting recently. Core muscles weaken. Allowing for now new nerve impingement from that old injury and muscle weakness?

We'll see. ALS brings nerve damage that the individual simply cannot prevent. My original neuro counseled proactivity to prevent nerve damage wherever possible - with me particularly susceptible due to the tendency towards hyper-excitability?

Here should apologize for writing of the above - which is NOT ALS for I appreciate that this is an ALS forum. Still perhaps for new readers in this part of the forum it reinforces the complexity of the human nervous system. My garden variety fasciculations 20 years ago soon disappeared. A cousin (again perhaps due to the familial tendency) now has a BFS-syndrome. Her fasciculations have NOT disappeared but going on a year later there is no weakness and her neurologist (from the first) saying no ALS.

My very best wishes to all on this forum. The muscle weakness I'm experiencing even if it cannot be immediately explained and is clearly not ALS still helps if only to a very very small degree better appreciate the frustrations of those dealing with a systemic disease like ALS.

You all have both my gratitude and my admiration for your determination to keep helping others.

Ann P.