als at 20? tremor fasciculations ect

[sophia000]

hi I’m a 20 year old female with no family history mainly worried about progressive weakness, fasciculations, loss of dexterity and tremor in my left arm/hand (especially thumb and pointer finger). I know als is highly unlikely given my demographics and symptom progression but a couple things really scare me.

I am sorry if this is disorganized long and perhaps unclear I am in a terrible place mentally and honestly I have been constantly high for the last year to cope with life (although I know it’s nothing compared to what most of you guys are going through) so it is hard to remember details of my symptom progression.

background
i have pots raynaud’s phenomenon slight hypothyroidism and probably a vitamin d deficiency. in high school i developed a tremor in my hands (overnight) started getting muscle fasculations in random places that would last for hours/days and also weird sensory stuff like feeling so certain that there was an earthquake because of full body internal tremors.
in November of 2023 i started getting a tingling sensation in my left hand and a weird cramp in my right foot that lasted days.

this last November i remember my feet were cramping up a lot and then one day i woke up and walking got weird with my left foot…i don’t know how to describe it like im just pushing off wrong and i have a hard time keeping up with people when walking in a group (but other people don’t notice a limp or anything and i can still walk pretty long distances), went to the doctor about a month ago for a pain above my right knee and she said said she noticed muscle wasting in my calf muscles which she chalked up in to my sedentary lifestyle and told me to go to physical therapy. i can stand on my tip toes on both sides but it’s harder/awkward on left. i can’t straighten my left pinky toe like i can with my right. i was getting a lot of fasciculations in my left leg back in November/December but those have gotten better actually. also started getting the fasciculations in my tongue and lip around this time.

left arm
now back to the arm… tremor began to get much worse on the left side maybe last spring (no resting tremor, just when i’m trying to hold my arm against gravity/do something) by july i couldn’t hold a joint lol without my hand going crazy. randomly drop things. noticed dishes started feeling heavier when washing them (although that could be me overthinking) and certain things like typing or opening a bottle or using my phone with my left hand got harder.

also last fall i started noticing that when i yawned my left arm/that side of my chest would shake. then the tingly weird tense feeling began to spread up my arm (i am terrible at describing things… its like when i move my finger even i can feel my whole arm tense up and tremor, but its also always tight and shaky). went to the gym a couple times to do arms but my left arm gives out faster than the right and also after I couldn’t straighten my left arm and had no dexterity in my hand while my right was fine. around last week the tremor and dexterity problems got significantly worse in my pointer finger and thumb although my hand seems pretty strong still and full range of motion. but fine motor skills like buttoning a shirt take longer. bending my pointer finger causes it to shake dramatically and i feel a muscle activating around the base of my palm which is just… strange). to me it looks like certain parts of my hand and arm are wasting but i understand that’s something you can’t self diagnose. i have some weird sensations in that arm that aren’t quite muscle twitching, more like popping and buzzing. i’m pretty sure my sense of smell has been getting duller

as for tests it’s tricky because i have a hard time communicating with doctors and <profanity removed> insurance so I haven’t gotten much in terms of mnd specific testing but I had a consult with a doctor in november and told him about my fears of als/ms and he did a quick examination of my reflexes and strength said it was all fine.… but things have gotten worse since them. i also had a couple week period last year where i became kind of incontinent . that (combined with other reasons) made me think it could be ms but i tested negative for the epstein barr virus which rules that out? and my hand has continued to get worse and worse (no remitting). i have gotten tests for autoimmune diseases that have come back negative.

i have some other weird sensory issues (tmi but i have chronic vaginal itching and tingling sensations that radiate outwards through my legs and stomach that started in july 2023 and doctors have no answers i have tested negative for everything- i bring this up because maybe it could be a spinal cord issue??).

I am mentally ill and a hypochondriac so everyone in my life has been incredibly dismissive (and if it was just the fasciculations or something i would also assume it was just psychosomatic). i’ve read about slow and atypical progression in young people so i guess main questions are, do you think als is a possibility when i have been experiencing symptoms in my hand since november 2023 and still have full ROM? should i try to push for an emg? i’ll go back to the doctors regardless. thank you so much for taking the time to read all of this sorry if it’s insensitive i am just so so so scared

 

[lgelb]

No, I don't think ALS is a possibility, and I'd say that whatever your age. But if you are staying high to cope with your fears, your mobility, sensory perceptions, and ability to perceive your situation objectively are all naturally going to suffer.

Key here to my dismissing ALS is the timeline and lack of objective functional impairment. I am also unclear as to whether you have started PT or exercised more as recommended. I certainly would do that, if only in the name of data.

You mention a mental illness -- that, of course, can also color your perceptions of your body. And naturally you want to live your life with less fear. I would go back to the prescriber(s)/counselor(s) you have been working with and provide them with your synopsis, and ask about next steps to optimize your psychopharmacotherapy and rule out any physical systemic illness. If they are not up for working with you to feel better, I would ask to be referred out.

If your access to care is limited, bear in mind that there are plenty of more reasonable/accessible telehealth options in California, including video, texting, audio, etc.

Even on Medi-Cal, if that's your insurance, you can ask to talk to a patient advocate or nurse and talk this through. Or since you acknowledge difficulty communicating with docs, someone else might come with/dial in and support you.

There is help out there. But it's not here, because ALS is not in this picture -- excellent news.