Somewhere between

Status
Not open for further replies.

Midwesterner

New member
Joined
May 25, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
IA
Well. I put off posting for a long time. But now that im in the diagnostic limbo where I myself have stopped bargaining around my symptoms, i suppose i might as well.

I, uh, could put the starting point earlier in 22, maybe january, maybe not, its kind of a 6 month trainwreck. I turned 40 this month.

Anyway, i have had general lower body exercise intolerance for awhile. Just figured after 2020, must be the pandemic haze, i just need one good week of no side sicknesses, sleep, right as rain.

Then got covid last oct, and then omicron in feb. Kept feeling like it takes more to breath, muscle wise, lung xrays clear so idk. Kept clearing my throat, cant get all my saliva to go down. Post-covid, sure sure.

Wicked sinus infection in april. Back pain to a steroid that month too.

Just need one good, healthy day. Lots of summer plans. Lots of career stuff. Family stuff. Big summer.

Then, er visit one. Sudden heat up my spine, into the back of the head. Ct clear. Mri follow up clear. Bloodwork is gorgeous. Must be anxiety.

Except, while im in the hospital, i notice this wavy ripple in my calf with occasional pops. Its constant. I see it but cant feel it. Nurse ignores it, i move on.

I go home w no answers. I start having tinnitus and hyperacusis, night startles. When i start to relax, my head muscles sieze up, tongue involuntarily spasms into the roof of my mouth. I stop being able to remember falling asleep, i just click off at some point. I wake up the same way. No longer able to go "back" to sleep. Tongue thing happens in mornings now.

The twitching moves to my thigh and right leg, then my hands, ab, diaphragm, back, face. These twitches are more standard but less frequent. Calves still ripple 24/7. Right achilles heel stiff for weeks on end.

I get put on the emg cancel list, but even today, no appt til august. Sleep study? Telehealth appt in sept to "see" if i really need one.

Neuro appt w early 30s siezure doc who never once looks visually at my legs. Like all the docs, he wants to talk about migraines and headaches. I get a 3rd migraine med i never asked for. He says als is for old men.

My gp, who i had only met one time prior, starts deferring me to the neuro who defers me to the gp....

This is when my legs turn to jelly and my knees start buckling and i stop being able to be up walking for long spans of time.

I get a nurse to refer me to the research uni clinic for a 2nd opinion but as of today, i have never got a call indicating as such.

I twitch 24/7. All over but more finely in my calves. Worse at night where my tinnitus gets going. Listening to my wife on the phone is enough to trigger the wierd inner ear shuddering from noise. My legs are weak, they pop, theyre stiff, they tire. Im unstable walking.

I have problems of course sleeping, as relaxing triggers my throat to close or tongue to clench. I sharply inhale awake or twitch.

Im losing weight noticeably. After the initial neuro visit, the amitryptline he gave me caused a cardiac event, so an er visit there led to a switch to propanolol. Presumably for anxiety.

So thats where i am now. Not sure what doc to bother, because frankly, none of them care. Ive messaged and it just doesnt matter. Idk what covid did to your neck of the woods, but in iowa where covid kim reigned, it destroyed our med staff. Huge exoduses, transfers. Over half our nurses are traveling nurses. My longtime gp quit in 21. Our hospitals are still at limited capacity. Basic appts are months out. E.R. docs are burned out and checked out. We have 1 - 1 - hospital in IA city that is reputable with an als clinic.

I keep trying to negotiate that even worst case scenario, isnt there supposed to be something gradual about it, dont i get a plateau to get support or help?

I dont know what to tell my kids. Ever single day is worse than the last. I thought it left you cognitively ok but im ear ringing, sleep clenching.

I have a spine mri on the 22nd. Neurosurgeon - older gent - scheduled it because theyll do them anyway to rule out and he was upset no one was doing anything faster. Waiting on referral, i think? Waiting on emg.

I just know my symptoms arent waiting. And im so scared. I married my best friend. I have two wonderful kids. My youngest has intense ocd and sensory issues, her biggest fear is change, and she already has rituals to keep me and her mom "alive." This will break her. I dont know how to do this. And i dont understand whats happening. Theres so much medical gatekeeping and indifference here right now, i dont know what to do. Thats it. Thats my one thread. Thanks.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,164
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm sorry about these issues. I don't think they're ALS. Even though a sleep study may be down the road, you can video your own sleep and send any suspect clips to your doc via portal. Even your PCP can write for a home sleep study, or even a cheap CPAP to do an empiric test. Speaking of empiric tests, have you tried a nasal steroid and/or oral non-sedating antihistamine like fexofenadine? A low voltage heated mattress pad at night to try to relax your irritable muscles?

There are also third party telehealth services that can see you faster, including neurologists (often you can see some reimbursable options on your health plan's home page, as well), and at least weigh in on this constellation of symptoms, which, as you know, can be associated with post-acute Covid.

Best,
Laurie
 

Midwesterner

New member
Joined
May 25, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
IA
Thank you Laurie.

It is 6 of one, half a dozen of the other. I did put in a request for a telehealth appt today. I had seen an ENT who gave me an all clear from his end, so no help there.

I am also actively avoiding doing anything I know will end in failure not just feeling, if that makes sense. I've never had burning thighs from something as simple as getting up from the bathroom but i do now, and if I go outside and start working, im going to go over. I'm going to reduce the propanolol a little to see if that helps the legs. Anyway, best wishes, thanks for letting me scream my frustrations a little.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,983
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm sorry for all that is going on.
Let me tell you clearly however, you don't have to avoid anything that will end in failure, not just feeling.
When someone has ALS they feel perfectly normal. The notice they simply fail to be able to do things they should do easily.
It is that simple and obvious.

I am not seeing ALS red flags in anything you are reporting. It certainly sounds more like something systemic, I hope the you can return to health fairly quickly, but long covid can be brutal.
 
Status
Not open for further replies.
Top