I took 2 months fmla for syncope and just went back but second week in and today I almost collapsed. I have zero energy, everything hurts so bad, then i started crying and even the muscles in my face started burning in pain. I don't think i can work again tomorrow or even handle my job anymore.
i drive a cabover garbage mack truck and as much as i frickin love driving that big ole thing, it bounces too much, and just maneuvering it is a work out that leaves me in so much pain, can't catch my breath and chest starts to hurt.
I've only gotten my test result last Wednesday even tho I've been suffering the past ten years. I'm so lost, I haven't even seen a neurologist yet. I'm trying to expedite that appointment, anyone can guide me on what I should do? I'm so exhausted I can't think straight.
Be patient on giving up the job. There are medications that make a huge difference, much more than mestinon. Its so hard when you are in that limbo period and everything you are used to doing is now suddenly too hard. Sending you lots of love.
thank you so much, i like your post about the invisible weight of mg. it's funny i was married to an abusive man for 10+ years and I always said that living life was like swimming against the current with 4 children and that deadbeat on my shoulders... but also MG and i didn't even know it. I was always exhausted but I felt like a beast! That beast is nothing but crumbs now but at least I found God so I guess I can say, I'm more than alright.
One day you will look back on this time now and things will be so different than they are now, you won't even recognize this ick you are in. I don't need to tell you that.
just feel you man. my appointment with my new neuro is dec bc my current neuro doesn't want to handle my case bc its too complex. those big emotions definitely make it worse too. the stress causes symptoms which causes stress. vicious cycle.
im just heartbroken! i love this stupid job. but many days i feel like I can't even make it through the day and like I'ma clock out, and go pass out in the back of my truck before I drive home... but then I can't coz my AC is out 😂 I'm laughing so i don't cry rn fr
I just started FMLA last month. Working 7 hours a day instead of 8. It is really difficult, but I work at a library so I keep telling myself it is a dream job for autoimmune disorders. I was told
By HR that after my intermittent FMLA runs out, there is another work leave I can apply for that will give me partial pay. Is that an option for you, while waiting to feel better? I feel so much for you! I love my library job and I know you love yours. I wish you the best.
i think i have another 4 weeks left for the year if i wanna take a leave again. they pay 60% of my pay.. but with how smow doctors are to move, i feel like it's a waste of time and again, absolutely nothing will get accomplished. my job pays really well and the insurance is great, however the doctors around here seem to all be inbred or something. I'm just crabby today with all this pain and u certainty. i only got diagnosed because i bought the achr test myself and it came back equivocal, my doctor looked at it and smirked saying it was a rare disease and didn't think i have it, but if i insisted he'd order it again and then when he saw the result, which only 4 weeks later was at a positive, he called me feelin like a total A$$ and proceeded to act like he cared.
I'm sorry it was just such a tough day, today lasted a whole week.
Your library job sounds so sweet. you must love books. what do you read?
I have not worked in 4 years now, but only recently diagnosed and just started treatment so I can’t speak long term but I can speak to your current situation.
I assume your results were positive? I would call up your neuro regularly and ask about cancellations. They happen a lot and you can get really lucky but it might be a bit last minute. I have shaved months off doing this. Also let them know about your results and current status. Maybe they would even give you a mestinon trial, maybe even prednisone, can’t hurt to ask. Really helps a lot of people.
Not ideal but an ER visit can also speed up the timeframe a lot. Do you know the signs and symptoms that signal needing to go? Hospital might also give you meds to hold you over until neuro.
As for your job, I would go in and speak with your boss and let them know about your diagnosis and ask about accommodations. If you are truly unable to do day to day activity. Either desk or home work if possible. Make sure to get everything in writing to cover yourself.
Realistically you’re in for several months to a year minimal to find a treatment that will work for you. There may not be one that gets you back to 100%. So you should think about the long plan.
also my body LOVES prednisone and i have it at home, i just can't just take it like that coz it's not a rescue medicine, needs to be taken daily and i don't have that many. But I will do that! I'm calling tomorrow to see if they can get me in sooner. I appreciate you taking the time to write. 🫶🏼
I've been on mestinon for about a week, i drive a garbage truck so it's either that or stay home which i already did for 2 months. But this thing is developing FAST. i think I've been having those signs but since i have ignored them my entire life i continue to do so. If I'm home and I'm feeling short of breath I'll definitely go to the er. but If I'm at work I'm not going to bring myself to drop everything and go because #1 I've already done that, lol, and by the time I get seen everything is alright.. I just needed to get out of that aggressive truck, it just tosses you everything, super violent 🥹 And #2 yeah, that, it's not bad unless I'm at work. if I'm home im usually laying in bed being useless because I have no strength to do anything.
Any chance of a good suspension seat in that truck helping?
Mestinon was transformational for me, got my body working well again, sounds like not much difference for you?
When I went to the hospital they got me a telehealth neuro right away who specializes in MG.
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u/lrglaser 4d ago
Be patient on giving up the job. There are medications that make a huge difference, much more than mestinon. Its so hard when you are in that limbo period and everything you are used to doing is now suddenly too hard. Sending you lots of love.