Fasciscs/ fatigue / weakness?

[Davidscared]

Hello All,

Thanks in advance for reading my post, as many post in this forum with similar stories. I have read the sticky and I was torn about even posting here, but felt like I needed to.

Five months ago, I started experiencing what I would describe as a feeling of awkwardness when I’d walk - as if my legs weren’t all the way under me. On July 5th, both legs started twitching along with various twitching throughout the body (shoulders, back, thumb, eyelid, arms, lip, and eventually tongue). I had an emg in August which came out normal, and upon physical examination my doctors found “nothing”. 3 weeks after the twitching started, I developed stiffness/extreme fatigue in both of my hands. I also had a general fatigue in my whole body. I’ve since pursued a bunch of blood tests, seen rheumatology, physical medicine, a naturalist, etc. They all have ruled ailments in their area out and keep pointing me back to neurology (my fascics are regular and visible so the doctors are able to easily see them).

Most recently, I have felt even more unstable in the legs - as if my balance is getting worse. My upper legs tend to feel fatigued. One thing I notice about my fascics that I’d like to ask about is they seem to be exasperated after I walk where there are times they’ll settle down and be less noticeable after resting a while (they never really go away).

Is it possible my emg was done too early in the process? Are the fascic patterns I described above consistent with mnd? What about the hand weakness/fatigue? All this stuff came on suddenly and it’s terrifying, as the doctors have yet to give me an explanation. Appreciate your time in advance.

 

[Davidscared]

Couple other things to add - I’ve been crying a lot and I’ve also lost 25lbs over the last two months. Not sure if these are related to the condition, or the stress/anxiety I’ve had going through this ordeal.

Also one note on the fascics, they are mostly tics, rapidly firing everywhere (many times per minute), but, I do get a hot spot on my ankle that pre-cramps and moves my foot. This has developed more recently.

 

[KarenNWendyn]

Assuming you were examined by a neurologist and all physical tests for strength and reflexes came out normal, then that combined with a normal EMG clears you of ALS. Since the EMG was done after twitching and other symptoms began, it was not done too early.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Examples would include inability to rise up on your toes or heels, inability to fasten a button or open a ziplock bag, slurred speech that others can hear.

So your story doesn’t align with ALS. Thats not to say you don’t have something potentially serious going on, just not ALS. Keep working with your doctors.
.

 

[Davidscared]

Can you comment on the fascics pattern and if worsened intensity after using muscles is consistent w/ nmd? Also, can you comment on what timeframe you would expect do develop function loss/clinical weakness after initial symptoms/fascics start occurring?

Thank you. I see my neuro again on the 27th.

 

[affected]

No need to comment on fascics patterns, they mean nothing, truly. They are not linked to when clinical weakness will start - keep working with your doctor, that's your best way to find out what is going on and what treatment is appropriate.
The great thing is, as Karen says, your symptoms don't even begin to line up with ALS

 

[lgelb]

Karen can comment, too, but (1) is no, because it is not like musculoskeletal trembling when you are tired, dehydrated or anxious. And re (2), as we have said many times, without clinically-perceived impairment in any muscles with fascics, the latter is not of concern in re ALS.

Benign fasciculation syndrome (BFS) is a real thing, and while it's no fun, it's not ALS. It can also cause anxiety, emotional lability, loss of appetite and other features that you describe.

Assuming the neurologist continues not to see features of concern, my suggestion is to focus on the symptoms that impede your daily function and/or jeopardize your wellbeing (e.g. unintentional weight loss if you did not have the weight to lose), in partnership with your internist, perhaps PT, and focused attention on sleep, stress, nutrition, hydration and exercise.

As you will have read in threads here, many people are astonished how much better they can feel when they can internalize the idea that they are not becoming paralyzed, and that their wellbeing is under their control.

Best,
Laurie

 

[Davidscared]

Thank you all.

 

[Davidscared]

Follow up here - I saw the neurologist again today and have another emg scheduled for early December. Still no clinical weakness on exam which is a great thing. He said my signs are pointing towards BFCS due to the intolerance for exercise and rapid muscle fatigueability. One thing that scares me and I’m concerned with is a new symptom that’s been developing over the past two weeks that the doctor just kind of glazed over (suggesting it may be related to allergies), but due to fact that I don’t have a high degree of confidence with the amount of experience in this space, I wanted to check back with the folks here.

About two weeks ago, I started having some irritation in the left side of my throat. That coincided with jaw pain and pain in my rear teeth in the left side (I thought I had just been clinching really hard during my sleep, possibly related to the stress of this all). The tooth pain has been getting better, but I am most concerned of what feels like inflammation in my neck, up around my jaw, and even up above my ear (with some pressure in my ear) The inflamed feeling has come and gone a bit, but the lump/irritation in my throat has persisted. It has made dry swallowing difficult. The fact that this has persisted for a couple of weeks, coupled with all the other symptoms (fascics, fatigue, etc) has me very scared that my condition is progressing. I know only time will tell, along with my EMG in December, but, my question is whether or not what I’ve described at all is consistent with bulbar progression or if I really shouldn’t be concerned? Worth noting, I have fasciculations in my tongue (not the bag of worms as he described, but more of a constant dimpling in the center of my tongue). No noticeable atrophy. No choking. Bite marks on cheeks and tongue as well. Over last two days, there has been a bit of slurring, but I was chalking that up to me being subconsciously sensitive to the painful teeth and throat. Any input on this? Just looking for some feedback to carry me through until my next EMG. Thank you for your tolerance and patience with me.

 

[Nikki J]

It doesn’t sound like bulbar at all to me. And your neuro clearly felt the same and his opinion should be the most important here. Don’t worry and let us know after your next emg which I fully expect will be good news

 

[Davidscared]

Thanks, Nikki. Aside from slurred speech that others would notice, could you offer any insight on how bulbar progression would present? Particularly, is there a constant feeling of irritation/slight pain in the throat? Just trying to settle my mind.

 

[Nikki J]

No that isn’t a symptom. We don’t list symptoms because sometimes once people read them they think they have them.

 

[Davidscared]

Thanks - I guess I’ll keep trying the flo-nase, Allegra, and Neto pot and hope this feeling goes away. It would certainly ease my mind while I wait for that next EMG..

 

[lgelb]

Ask your dentist about a night guard if you're grinding your teeth, and make sure your sleep area/bed are the right temp (not too hot or cold). Also ask your PCP to check your ears if no one else has.

Don't worry about ALS.

 

[affected]

ALS isn't about what you keep 'feeling'. Please just come back after your EMG and let us know the good news. All the best, we know it's hard but truly we can't do anything here. You must ease your own mind now.

 

[Davidscared]

Waiting weeks for an emg is a bit of torture. Just following up on my throat concerns - my throat has been irritated for the best part of a month now but it doesn’t seem “viral”, not a lot of mucus. However, I’m constantly having to “clear my throat” and swallowing (without food or water) feels difficult/incomplete as if the left side of my throat is not pushing or something is in the way. I wasn’t reassured by an ENT appointment where she didn’t see any physical cause for what I am experiencing. Swallowing food and water is not a problem however I did have a little difficulty with pills. Just looking for reassurance that this still does not sound like bulbar progression? I have no other explanation.