Strange Symptoms

[Mikedwthals]

Hi everyone.

New member here with a first post. Still looking for an elusive diagnosis for my symptoms, and I'm still waiting for a call for an EMG appointment.

Anyway, I have several symptoms that could suggest ALS, but I thought I might ask if any of you have experience with some other oddball symptoms I have:

Fibrillations (used to be just tingling) in cheekbone area, sometimes going to temples or bottom eyelids. Generally symmetrical in location, onset and severity. More intense when smiling (ha!).

Traveling weakness (this is a strange one that baffles my doctor). I get these sensations of weakness that are symmetrical, and jump around from different locations/muscles. It affects fingers/thumbs, wrists, biceps, triceps, parts of legs, shoulders, etc., but not at the same time. Onset is sudden, and usually lasts anywhere from 1 to 15 minutes before jumping to another muscle group. No apparent pattern with prior usage of the impacted muscles.

I've read through your sticky note messages and there's good information there! But I thought I might throw these symptoms out for comment.

 

[KarenNWendyn]

Fasiculations in and of themselves are common and nonspecific. Traveling weakness does not suggest ALS.

 

[Atsugi]

In case the OP expects more responders:

Mike, there's no indication or even suggestion of anything at all like ALS in your post. Very much NOT ALS.

 

[Mikedwthals]

Thanks for the replies, everyone. Of course, those are just the odd-ball symptoms. There are others, but having read through enough posts on this forum I think I can guess what replies I would get.

I'm on the waiting list to get an EMG (4 to 6 month wait, ugh). Any Canadians here have experience in speeding up the waiting process?

 

[ShiftKicker]

Mike, there's no speeding it up if they don't think it's urgent. 4 to 6 months is actually pretty good, though difficult to wait for. I don't see you mention a neurologist- do you have a referral to one? Has your doctor referred you to any sort of specialist?

Transient or travelling symptoms don't indicate the steady neuron loss that those with ALS/MND experience.

 

[LizF]

Mike, agree with everything said above, plus this: I presented at a walk-in clinic to a busy GP that I'd never seen, with weakness (NOT TRAVELLING) in legs, with a few other symptoms. I had an EMG less than six weeks later, and I learned it was because the initial doctor was concerned enough about the possibility of ALS that it was in my chart and I got "fast tracked". As Shiftkicker said, there's no speeding it up if they don't think it's urgent.
Of course waiting is hard, but I don't think you're waiting for ALS based on what you've said.

 

[Bestfriends14]

We are also in Calgary and my husband's initial EMG was with Dr. Tulsi, who is a neurophysiatrist and EMG specialist in the NE. Combined with what Dr. Tulsi saw (asymmetric atrophy, EMG findings and brisk reflexes), he had my husband referred and into the ALS clinic at South Health in 2.5 weeks. We saw Dr. Chhibber, who normally has a wait list of 1.5 years, who confirmed the ALS diagnosis.

In other words, doctors suspected ALS prior to the EMG because of my hubby's severe weakness, severe atrophy and inability to walk unaided. They pushed through his initial EMG and my husband was in with Dr. Tulsi within 4 weeks.

In an ALS diagnosis, symptoms such as you mentioned do not go hand in hand with the disease.

 

[Mikedwthals]

Thanks for the replies, everyone. I saw a neuro a little over a year ago for some other sensory-related symptoms (I know, these point away from ALS), which was inconclusive but not considered worrisome by the neuro. I'm also waiting on a few other specialists.

My more recent symptoms have me a little concerned, but from what I've read on this forum, they likely don't amount to ALS. I have some minor atrophy in my right hand, weight loss and loss of appetite (this could be anything), twitching (again, could be anything, or BFS) and some strength issues in my hands, but they seem to wax and wane so likely not ALS. But I'll go for the EMG anyway.

I've noticed some advice passed around on other threads about possible blood work to diagnose issues. I might suggest testing for B6. Mine is elevated and likely explains my symptoms. But a deficiency or toxicity with this vitamin can produce (so I've read) symptoms that could potentially mimic MS and ALS, and are different for everyone. Most GPs dismiss it as water-soluble, but it's not that simple. Anyway, this isn't the place to discuss this issue, but I thought I might pass it on for the heck of it.

Thanks again for everyone's response. I acknowledge that my situation is probably the least serious of anyone who has posted here (well, almost :wink, so I respect your honest feedback.

Best of luck to everyone.