Feeling “off”

[CButter]

Hello Everyone,
Ive been feeling “off” lately. It all started about 2-3 months ago on the tail end of a gastritis/stomach ulcer episode. My right bicep started persistently twitching. I exercise frequently, love to hike, play the drums, and I’m generally fit and active. At first I attributed the twitch to drumming and reptitive use. I even thought maybe the meds for my GI issues may have caused an imbalance that was manifesting this way.

Well, 1.5 months later and my right arm is weak, tired, and fine motor movements in my right hand have diminished. I’m grabbing things differently and it just feels off. Also during this time my right leg has felt weak and I have noticed on a few occasional weird “catches” of the heel as if im not lifting it high enough. I also like to run, but the last run has left me feeling assymetrical weakness.

My right leg ia considerably more sore than the left and my recovery time feels longer than usual after workouts, both upper body and lower body. The muscle twitching has also spread ALL over. It has gotten so bad that over the last week it has begun to interrupt my sleep schedule. I have also had right ear spasms and tinnitus over the last couple weeks and today I found myself talking weird with my tongue and fumbling words.

I made an appointment last week with the first doctor I could get in with at my facility and had a follow up today with my PCP over telehealth. The bloodwork and urine from last week’s appointment is normal as I suspected it would be. At my appointment today I voiced my concern of ALS alongside Lyme disease and a Fibromyalgia/restless leg syndrome combo. My PCP and I both agree that a brain MRI (I would also like a cervical) and an appointment to a neurologist would be wise but does not suspect ALS. I could tell she was a little concerned though.

I studied Neuroscinece for my undergrad and have goals of pursueing a career in medicine. I know quite a bit about this disease already and maybe that is contributing to my worry but, to me, at this point I find my symptoms are highly suggestive of ALS. Im well aware of the sheer power of this disease and life expectancy is not great.

Fortunately, I do not have a wife and kids but I’m worried about how hard this will be on my family, especially my single mother. <snipped>

Any feedback would be appreciated!

 

[lgelb]

There is a pretty classic spiral that people familiar with diseases can get into, if they know something about them and happen to exhibit a feature that is characteristic. The hitch is, often the feature is common in other disorders as well.

You sound like someone in that spiral. I honestly have no idea why you jumped to ALS. A virus, a bacterial infection, fragmented sleep, a combination of overuse injuries that your mind is blowing up, lack of stretching before/after you run...so many possibilities that are very treatable. For example, ear twitching and tinnitus make me think of an ear infection, sinusitis, etc.

I also wonder what med(s) you were/are using for the GI issues, as some of these can be implicated in issues such as you describe. You mentioned that possibility yourself. Or you could have GI paln or gas waking you up at night, triggering lack of sleep and accompanying twitches, esp. if you are somewhat less than optimally hydrated.

Since you jumped not only to ALS but to your single status and your single mom, no disrespect, but it does lead me to wonder if there are some side issues that could benefit from counseling. The life of a student in these times is a stressful one.

Let us know what the neurologist says, but you have not described clinical weakness nor any constellation of symptoms that would lead us to worry about ALS.

Best,
Laurie

 

[CButter]

Hi Laurie,
Thanks for your reply! I probably should have just mentioned my symptoms rather than divulge personal background, it would have made my post much more objective rather than subjective.
My big concern really is the rapid progression from a twitch in a single body part that has spread to almost every voluntary muscle I have in such a short time and is now accompanied with other symptoms like weakness and speech abnormalities. you are right about the possibility of other things but it seems way too “textbook” for there not be a valid concern. I’m trying to stay positive and not dwell on it until I know but its really hard when the twitching is now keeping me up at night.

i mentioned tinnitus because of this: Live and laugh: a journey through motor neurone disease. and figured i would just list off everything incase members on here who have ALS have been through a similar progression.

Thanks again, I’ll update after the MRI and neurologist visit.

 

[Nikki J]

Just because she had tinnitus before MND does not mean it was a symptom. You will find PALS with tinnitus certainly because it is common and incidence increases with age as it does with MND

you are reporting symptoms in all areas over a very short period which is NOT textbook at all. It is extremely rare to progress like that and people who do are not having to ask on the internet they are so rapidly progressing that they are experiencing paralysis in their initial onset area and are often near death. We had a member here once who was FALS all her family went from fine to dead in under 3 months

twitching as a symptoms is meaningless. the things that matter are clinical weakness and upper motor neuron signs

yes please let us know what your results are