Opinions please

[ARD425]

Thanks in advance. I have read the posting guidelines. I will try to be as succinct as possible.

58 year old male, otherwise healthy
Meds: Wellbutrin and Lipitor
Symptoms:
-August 2021: noted tremor when working out in right quad only, doing leg extension. no issue with left leg
-November 2021: same tremors when walking down stairs, right leg only. Also noted some mild atrophy of right quad. I am very active with cycling, etc so I have reasonably strong legs. Also noted some weakness in right compared to left. About a 2 cm difference in circumference
- November 2021: slight tremor in right arm/hand when at rest. I can consciously stop it, but does occur sporadically
- Increased frequency of throat clearing.

In December I went to see a neurosurgeon/colleague and expressed my concerns about ALS or other NM disease.
Workup:
-full MRI from brain to lumbar spine: mild degenerative changes. no clear stenosis or lesions
full lab work: no abnormalities
Neurology exam: 3+ reflexes (although I have been hyper reflexive my entire life, and this was no change) Mild body wide fasciculations
EMG/NCS: normal NCS. right quad with evidence of some "reinnervation," but no active denervation.
He felt that I may have a component of BFS. He did not feel that EMG was indicative of ALS, but could not give a good explanation for right quad symptoms.
I did have injury to right knee several years ago. Suggested possibly favoring left leg over right (I do not agree)

February 2021 Had second Neuro workup at Strong/University of Rochester NM center including EMG(although seemed less thorough than prior EMG as far as number of areas tested)
- very slight weakness in right adductor muscle. EMG showed occasional fasciculations. Acknowledged some right quad weakness, but did not feel I met criteria for ALS.
Again, no good answer for quad weakness/slight atrophy

Since then: continue to have mild tremor in right arm/hand. Have fasciculations pretty much all over. Slight, but noticeable. Have been trying to strengthen right quad, as per suggestions from neuro, but still definitely weaker than left. Still having tremor/shaking of right leg when going down stairs.

Although I believe the MDs are well trained and thorough, I am concerned that I may just be in the early stages of something; I have heard many accounts of early signs being misconstrued and then diagnosis comes several months/years later. I am troubled by the fact that no one can give me a good answer as to the quad weakness and the slight atrophy.

Anything more to do other than wait and see if things get worse/different and then repeat EMG? Thanks for any input.

 

[lgelb]

Sometimes there is no "good answer" except the very good one, "no signs of ALS." That is you.

You have an old R knee injury, reinnervation, and no active denervation -- no signs that point to ALS. Tremor/fascics per se do not play into ALS, esp. if you can "stop it." A 2cm circumference difference means nothing except possible support for a mild nerve injury playing up. Throat clearing -- this is allergy season, fascics may interfere with your sleep, you may be mouth breathing in sleep, etc. And there is always GERD.

Why not try the empiric test of PT for the R leg and see if you can improve/get the PT's view on it?

As for the R arm, whenever I hear about R leg/arm and evidence of an LE injury, I think about how you sleep and sit, possibly accommodating the R leg without realizing it, to the detriment of the R arm. It's also a good time to re-evaluate your pillow, mattress, chairs, sofa, etc. and how you sit. Those would be the top "more to do's" for me -- trying to see what you can do to move off a baseline that is troublesome for you, but, again, not one that we would normally associate with early ALS.

Best,
Laurie