I dunno what this is

[greatsharkbite]

Ill truncate it, but since march 1st i had symptoms where during the day my hands were stiff (and i believe even my foot was) went to ER they did a ct scan and showed nothing. The stiffness would last a few hours and go away. I also had lip numbness. After 5 days, both went away as I hadnt been sleeping but i got caught up on sleep using melatonin.

Four weeks later, I get this condition where I lost my ability to feel tired. Major insomnia, waking up every 20 mins or so this lasts a week with one day i got about 6 hours and one day 3 hours of sleep. I then wake up one day and my right arm feels 'weird' noticeable different from the rest of my body. My coordination feels slightly off, but nothing major. After two days of that, i sleep with that same right arm folded in and laying on my stomach. I wake up and it feels pretty stiff and the motor control of the arm felt off.

Now ironically the motor control would mostly be bad but sometimes and I would test this but for like 2 hours out of the day it would feel 'close' to normal. I go to the ER a second time, but my arm feels better and instead i discuss the insomnia--they recommended me hydroxyzine and melaton, doesnt work. But I keep on trucking.

I then have a day where the hand on that arm and my foot feel 'cold'. I thought it was because maybe the blankets were covering me, but it never quite went away. I go to the er and they do befast to see if its a stroke, I think I do well but they say i didnt show stroke symptoms because my arm isnt weak enough. Also in this time period the stiffness in my hands is there whenever i go to sleep and wake up. But the motor control of my left hand still seems fine..for now. I have noticed my neck has stiffness tho.

At this point its just my right arm but by the end of this week it also appears to be my left hand also is having symptoms. My thumb and index finger keep cramping on both when im scrolling sites on my smart phone. I keep popping my knuckles maybe for the placebo of that feeling going away. I go to my GP and they schedule suggest a neurologist. (as i THOUGHT it was some form of autoimmune, either rheumatoid or sjrogrens). I also schedule my own neurologist appoint -which they recommended but the neurologist they pointed me towards said they no longer worked with my GP and the one I had before then retired. It puts the process back but eventually i find one that took an appointment from me (in may)

My nurse at my doctors office also recommended me trazodone for sleep. I read the side effects and didnt take it as I have high blood pressure and other things and it sounded risky. Two days later my sleep returns but my arm feels worse. I used to have so much dexterity and control over it but it felt gone particularly in my fingers with things like even turning a lamp on and off. Now in the back of my mind part of me thought this was maybe a pinched nerve or rheumatoid (because both hands stiffened at night) but then the motor coordination started to affect the left hand.

Fast forward one week after the appoint with my GP (last week) she had ordered ANA antibodies which I was negative for as i told her i thought it was sjogrens. They weren't familiar so they read up on it and saw that wasnt the only test. At this point I still think its rheumatoid, but the issue is the pain is minimum. I sometimes get pain in my fingers typing, pain in my back and the numb/tingling of the lips (even a slight pain right now in my palm). I also have terrible brain fog at this point in time, despite feeling so sharp a month ago.

Now after this appointment when I went home to sleep, i basically felt my lips were dry and my cpap was too uncomfortable OR so I thought. But the next night I try to sleep with my hand cradling behind my head and my foot starts jerking on its own. Then my finger of the hand cradling my head starts tapping it. Then the worst one, my head jerks forward. These symptoms last the whole night and persist two days. I wake up every 2 hours of sleep WHICH sucks because just before this I felt I beat my insomnia. I also then started to get muscle twitches but they seem to only happen when i move my body for the MOST part.

But after the involuntary movement and especially the muscle twitching, I had been looking at ALS just this week and I wonder if its the start of something. Thanks for listening to me rant.

 

[lgelb]

I see the most likely scenario as your sleep is screwed up (possibly because of a movement disorder and/or apnea) and because of the severity, there are manifestations during the day as well. So I would track your sleep with a wearable if needed to offer data supporting an in-lab sleep study.

Alternatively, if you do have an autoimmune conditions that is affecting sleep, a more focused exploration with labs and other testing might be easier to justify if there is evidence that your sleep is affected pathologically in the first place.

 

[greatsharkbite]

I don't know. Its been difficult, but who isn't it difficult for. To go into a little bit more detail, I have severe sleep apnea i was diagnosed with in 2023. I have cpap which i utilize nightly. Your advice made me want to get a sleep study for pulmonary but its difficult to do with my job as im on a probationary period for 90 days and I ironically need the job to have health insurance.

The symptoms have gotten worse and more consistent. Since saturday the day before I typed my previous post, i've been getting muscle twitches. Which I know aren't necessarily a huge thing without clinical weakness. But my fatigue is huge and what was a minor issue comparatively even earlier this month has become a major health crisis. The fatigue started on friday and it is now more off then on and it doesn't matter how much sleep I get. I've basically been able to sleep fine since saturday without myclonus. The motor control is severe enough that lifting my hand to use a fork, feels off and awkward like my arm doesn't bend smoothly.

I also have severe brain fog. So to put this in perspective, with my sleep apnea diagnosis of 2023 I had severe hypertension (a hypertensive crisis) and tho doctors werent able to diagnosis it for nearly a month I had brain fog then too and I believe at that time I had a mini stroke/brain damage from sleep apnea (because unlike a mini stroke, symptoms lasted all day). I also developed photophobia, where any type of lights, car lights, blinds drawn letting the sun in, anything bright. I noticed it playing games/anime or even in youtube videos where they'd have a fake flash. Now after being almost completely gone that photophobia is back.

My eyes feel like i've had 1 hour of sleep but i've gotten good sleep for literally the past two days. They feel ok at first but after an hour or two the energy is gone. I've had an off on nostril flare like i'm gonna have a nose bleed, but for the past 4 days its really just been there. The other issue is with my hands my right/left thumb and index finger feel weak or rather the muscle between them do. Whereas my pinky and ring fingers feel sore. My toes are also sore in the same area that my hands are for both feet. I also have neck stiffness and even a weird feeling on the back of my head.

I have no one to talk to. Literally no one. My ex is sick, my mom is traumatized with people passing away young in the family and I have no friends. At first I thought it was rheumatoid/sjogrens because i read that a lot of people with those can have stiffness before the pain settles in. Also i've had weird dry eyes and my nose feels flared up BUT I was also on hydroxyzine around when that happened which can cause dryness as a side effect. Been off for two weeks but its back. The motor control being so intense it feels weird to shut off a lamp? I have doctors appointments lined up and all day I keep thinking i should go to an ER for the 4th time in 2 months because somehow in a month my gluclose rose significantly normal 1 ER visit (march 1st) /elevated prediabetic 2nd (march 28th) one all in the same month and they didn't mention it, i looked up the labs online and googled the ranges.

If it was just trembling fine, if it was just muscle twitches? Fine. I've had them before---for years and I know they can be benign. Weird, but i could still get on with my day. I literally feel like its over for me and to top it off. I keep hoping for other things that i NEVER wanted. Lupus, multiple sclerosis, lyme disease, cervical radiculopathy. I also FEEL guilt because its unfair for anyone to have those things and even more unfair to have ALS. Also just typing this, my right arm was twitching and my left arm started to twitch. I feel like a fool, i heard of the icebucket challenge, but didn't know ALS was this--what ive been reading up on.

The fact the symptoms only started march 30th and its april 23rd i don't know if i can cope with this. I consider myself strong, but this feels beyond me.

 

[lgelb]

If you are talking about a big change in A1c, of course, someone should be doing more bloodwork and looking for other signs of diabetes. But a transient elevation in a serum glucose can be due to lots of things, including dehydration and stress, which it sounds like you have in spades.

Is someone checking your CPAP data to make sure your settings are still appropriate? Again, if your apnea has changed, worsened, or if you've added a new sleep disorder, this could explain a lot. As for another sleep study, a Fitbit can actually tell you a fair amount after a few nights, directionally -- RR, pulse, temp, movement, sleep stages. So I'll stand on that advice pending your ability to get more tests.

 

[greatsharkbite]

I will take your advice. I didn't know if the flared nostril and the incredible fatigue in 4 weeks would be normal or not altho i know this doesn't have a time line. But it did all start with my sleep deprivation, i'll see if I can get an appointment for my pulmonologist as well and we'll see how it goes. I believe my earlier symptoms could've been sleep apnea related. Photo phobia, high blood pressure (I don't drink or smoke), fatigue, brain fog. I don't know.. but I guess I got to get it tested again. I'm just afraid.. feels like im on borrowed time and the incredible fatigue setting in since five days ago.

 

[lgelb]

If you are missing out on oxygen and adequate air exchange during sleep, not to mention the right mix and quantity of sleep stage minutes, that can certainly take a toll both mentally and physically. Seeing the pulmo is a good idea since they can check visually for any new obstructions/inflammations as can happen.

The best way not to feel like you're on borrowed time is to figure out the root cause here and fix it. I'm pretty confident that it's not ALS.

 

[greatsharkbite]

Ok. So update....

I went to the neurologist, originally I told them I thought it might be ALS. They did tests and told me my reflexes werent that of someone like ALS. Although at the time of the appointment I no longer thought I had ALS. I thought I had ALS because of I had severe weakness lasting for a week, my motor coordination seemed severely off, I had severe stiffness.. which I saw someone in a youtube video saying that stiffness without pain was probably ALS (they themselves had ALS). But the weakness went away and the fatigue got better, but the stiffness remained.

So I had more questions than answers. Also headaches lasting a month plus, something that felt like a nosebleed for two weeks, confusing my words.. if a sentence required me to say the word bus, i might say airplane.

All this to say did an MRI and an EEG, my primary care left me a voice mail that there might be a small brain aneurysm, that it could be something or could be nothing. I doubt this post belongs here but I feel the responses were very kind and I do appreciate them and wanted to just give a small update. Thanks again

 

[ShiftKicker]

Hi there and thank you so much for coming back to provide an update. Your post absolutely does belong here.

It sure sounds like you've had quite a time of it. Frightening when strange things happen with your health and it's difficult to track down cause. Really glad you're getting some answers and hoping you continue to find improvement.

Thank you again

~F

 

[greatsharkbite]

Thank you so much.