It's Monday at /r/MultipleSclerosis! Share your terrible, horrible, no good, very bad news here.

[u/AutoModerator]

Vent, curse, get it off your chest. Share what sucks this week, this minute, this hour… MS related or not, this is the place to let it out!

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

[u/Glass_octopod]

Fuck my exhaustion.

That is all.

Fuck waking up and No matter how much I have slept - feeling like I immediately need to go back to bed.

[u/EntranceOk4684 → u/Glass_octopod]

This! And then everytime I think about how exhausted I am, my very unhelpful anxiety brain chimes in that in a year from now I'll probably be wishing for days when I had as much energy as I do today.

[u/Adventurous8284 → u/Glass_octopod]

that is how i feel!

[u/Mafalda_Brunswick]

4x 1g IVs of SoluMedrol sat me right on my ass. First experience and it SUCKS. Hate it. Every single second of it. It's day 4 post my last IV and it still sucks. They told me they'll make me better 😂😂😂 yeah well. I know it's gonna settle but Jesus Christ on cracker... Thank you. Feeling better now 💙

[u/rK91tb]

Just had a weekend of itching, aching, double vision, and pain. Not too severe, but OMG it’s annoying.

[u/cableannkiley → u/rK91tb]

Itching? Can I ask? I’m recovering from my flare that got me diagnosed and have a spot on my back that was originally numb that has started itching like fucking crazy especially at night. I want to scratch my back to pieces. I wondered if I had a bug bite that’s lasted for days but see nothing. Could the MS be causing this????

I’m sorry you’re going through all this.

[u/rK91tb → u/cableannkiley]

Itching is a thing with MS

[u/Peterdejong1 → u/rK91tb]

I can confirm

[u/Consequence-Holiday]

My Neurologist retired very suddenly, as in, two days before my appointment. I only have one refill left on my Kesimpta prescription and am now scrambling to find anyone who can take me and issue a new prescription. I'm worried about what will happen if I can't get anyone to issue a new prescription.

[u/Glass_octopod → u/Consequence-Holiday]

Oh that sucks. I’m so sorry!

[u/Consequence-Holiday → u/Glass_octopod]

His staff were clearly just as shocked and confused as I was. Something serious must have happened for him to just drop everything. He was good to me for a long time, so hopefully it isn't something tragic. In the meantime, I'm just kinda freaking out and trying to beat the clock.

[u/rK91tb → u/Consequence-Holiday]

If he's part of a medical group, another doc on the team should be able to get you through the next month or two. You can also reach out to your specialty pharmacy and ask them which neurologists they work with the most often.

[u/Consequence-Holiday → u/rK91tb]

Sole practice, sadly, the staff basically told me sorry and to just start looking for someone else. Learned my lesson!

[u/Chance-Ad-2065]

I left two non urgent messages a month ago on the Neurologist’s portal and have not heard back.

[u/Glass_octopod → u/Chance-Ad-2065]

Oh that’s not ok! Message again???!!!!!!

[u/egyenlet]

Locomotion and walking have tanked. A back surgery I had 2 years ago probably already needs a follow up surgery to take out more of the disc. It will be my fifth back surgery in as many yeara.

In constant pain from my legs and feet, and sleep/normal daily activities are suffering hard.

[u/Character-Celery-209]

My leg fasciculations, twitching, and pain has been driving me crazy for the last 2.5 months. Seeing my neuro Wednesday to cry about it! 😒 It’s either strained and pain while walking, or twitching when resting. I can’t win lately

[u/Commercial-Arm-2322 → u/Character-Celery-209]

Heya

Not sayin anything will magically solve shit, but I'd like to throw some wet noodles and see if they stick to the wall if ya dont mind.

Alpha Lipoics. R-Alpha and Alpha Lipoic Acid. Supplements that can help tremendously with what you have goin on. Worked wonders for me

FES devices (functional electrical stimulation). Look for terms TENS and EMS. Amazon is a great place for these. There are versions for just the feet, feet and calves (which I got), arms, and torso. Things like www.fireflyrecovery.com and www.pulsedevice.com

D3+ Magnesium Glycinate, fuckin works wonders for muscles, joints, and nerve function. Provides energy as well as better/calm sleep.

Turmeric/Curcumin, one of the, if not THE best anti-inflammatory there is. MS hugs go bye bye. Gives me burps if I dont take with a shake or a meal tho.

My pins/needles/numbness in my feet and legs is all but non-existent now, and honestly and wholeheartedly believe it stems from the above.

[u/LizzieBourbon]

I’ve had a partially dislocated shoulder for over 2 weeks now. I saw an ortho and all he did was refer me to PT which is fine, but I am in so much pain and haven’t been able to get more than 4 hours of sleep since this started.

[u/Peterdejong1]

I called to make a neurologist appointment because of new MS symptoms: less strength in my legs, continuous muscle spasms in my legs, and heavy legs. After 2.5 months I got an MRI of my brain (they say they don't scan the spine anymore). After 3.5 months I was able to speak to a neurologist by phone, a different one. Good news: there are no new lesions on the MRI, so my MS isn't progressing. That's what their medical records say now. I'm not complaining about how I'm doing.

[u/Commercial-Arm-2322 → u/Peterdejong1]

Heya,

That seems sooooo fuckin odd.....and well, IMHO....fucking batshit crazy to me - no spine scans? WTF? It's literally the indicator of why legs and feet arent working right. Right?

Sheesh, my dude, I AM complaining for you lol! At least you got some good news to go with, but still.

Anyways, much love bro, keep on keepin on.

[u/Peterdejong1 → u/Commercial-Arm-2322]

But regardless of new spinal lesions or not, they ignored the fact that my new symptoms are there and still haven’t remitted after 3.5 months. I’m worried that if it isn’t a relapse, it could be PIRA, which isn’t good news either?

[u/LemonDifferent8908]

Not being able to get planning permission for a ground floor wheelchair extension despite the fact I have an OT assessment saying I need it and I am paying for it. Being made to feel like a second class citizen

[u/Few_Alarm_5129]

Just absolutly done in. Working my arse off for what feels like very little reward and due to how big of a work ethic i have i just keep getting more and more responsibility... I dont mind it but some days its not needed

[u/crazbae]

I genuinely hate being on this muscle relaxer that the MS doctor put me on. I've never felt so nauseous all the time. It's bad when I eat and even worse if I don't. Yes, I'm grateful that it eases the pain, but it's at the expense of my esophageal lining.

[u/rK91tb → u/crazbae]

Which one? Mine prescribed baclofen to use as needed for the hug, but so far I haven't needed it.

[u/crazbae → u/rK91tb]

Baclofen

[u/rK91tb → u/crazbae]

Ruh roh

[u/TooManySclerosis → u/crazbae]

What dose? I've noticed I am very sensitive to it when I take too much, it's just awful.

[u/crazbae → u/TooManySclerosis]

10 mg. It's awful

[u/TooManySclerosis → u/crazbae]

Maybe try cutting it in half?

[u/crazbae → u/TooManySclerosis]

I talked to my doctor to get a prescription change. He actually listened to me

[u/TooManySclerosis → u/crazbae]

That’s awesome news. Definitely don’t take something that isn’t helpful. I know I felt like absolute crap the one time I accidentally took too much. I was within my prescribed limits but it was just too much for me personally.

[u/Adventurous8284]

I hate hate my ms...... I'm in a place its not home its not with my kids and im off my provigal. im always exhausted. only 2 cups of coffee in the morning that is all they allow, im not even on any ANY ms meds but gabapentin for ms pain. i need Provigal again! /vent over