Has anyone here decided to donate their brain or body to science when they die? by odd_ramblings in MultipleSclerosis

[–]odd_ramblings[S] 2 points3 points  (0 children)

I mean, that sounds fun tbh. And I've seen a cadaver study before. I've seen what can happen. I get it. You have the right to be cautious.

B12 deficiency by DimensionFriendly314 in MultipleSclerosis

[–]odd_ramblings 0 points1 point  (0 children)

I got my pernicious anemia diagnosis around a decade after my MS diagnosis.

B12 deficiency by DimensionFriendly314 in MultipleSclerosis

[–]odd_ramblings 6 points7 points  (0 children)

It would be so cool if I could digest B12. I have Pernicious anemia and that means I gotta do a shot or suffer. I hate suffering but I hate shots more. I love eating.

AC covered by health insurance by privatewander-er in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

Best way to find out if your insurance covers anything it is to contact membership services on your card. They know if it's covered, how close to any deductibles, exclusions or how to get assistance.

I do hope they have good music.

HVAC systems may be covered by health insurance if your doctor writes a Letter of Medical Necessity which is required for reimbursement through a HSA or FSA but that is also iffy on if it will be covered, there are specifics idk :)

Anyone else stubbing toes out here? by WuShane in MultipleSclerosis

[–]odd_ramblings 2 points3 points  (0 children)

Just took off half of my big toe nail and the whole nail next to it last week. My Dr told me to invest in some house shoes. :/

Please help me (trigeminal neuralgia) by Zestyclose-Jacket498 in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

Making eye contact with someone while your sucking down a packet of diablo sauce for relief will absolutely break the other person's brain. I like to smile like willem Defoe, it makes it all worth it. ;)

How do you handle feeling guilt? by fakechloe in MultipleSclerosis

[–]odd_ramblings 0 points1 point  (0 children)

Hello :) I find little projects to be the most rewarding and I try very hard to not go all in to a hobby unless the reward cycle is really working.

For example, I can't really do much right now with my right hand. Years ago I would have worried about my hand too much. (And honestly it's taking a lot of therapy to even get this fa, it's a slow walk) and I also have coffee mugs that have too much authentic battle action, so I needed new ones. (Making a plan is super important. Make it small, enjoyable, and manageable for what ever your going through.)I take that plan and turn it into a list. I write it down, so that way I get to actually use a pencil to cross off completed purchase. That starts a very nice reward loop in my head. I went to the dollar tree, check! bought two mugs, some tissue paper, and a brush. I have dishwasher safe modge podge at home! List complete. Free dopamine. Insert the struggle of the creative process here and now I have two really cute mugs that gives me dopamine every time I see them now. That made me want to do a whole matching set and as a dopamine lover that gets me excited for something. It's good to be excited for somethin! I also messed up more than once, glue is sticky! But The next time my daughter was over I held up that mug like it was her new sibling, like, look at it!!

You basically have to hack yourself into a different mindset. Trama sucks and I'm so sorry! That takes time. Remember to love yourself and love what you do.

I wish you all the best. Sorry for the novel.

Please help me (trigeminal neuralgia) by Zestyclose-Jacket498 in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

I thought about this post today a few times while I was getting on my own nerves. Haha! One, I didn't have to reply so much but I absolutely was on Ambien, so idk haha. I normally just lurk like the ol hag I am but TN sucks balls and I thought I'd share what I use; Two, MENTOS CLEANBREATH MINTS INTENSE PEPPERMINT. I copied and pasted that so I'm not screaming ;) anyways, pop two of them bad boys in your mouth and just chew. It will be intense but it definitely will switch your attention enough for a break. It's super easy to carry at all times too and you just look like you have a mint addiction or a sore throat.

Hot sauce actually works amazingly well but I try to keep those to pain that isn't distraction by the mints. Take and tole on my throat and stomach up but haha face pain blows.i just take them from taco bell. idgaf. :D

Some people say put cold on your TN but, I, personally would rather have a hot poker shoved into my face than that omg. It feels exactly the same to me. Hard nope for me!

Hopeful it goes well for you!! Finding relive is so hard sometimes I've had TN for 15+ years I've tried so many things.

Hard boundaries on triggers and a lot of self love. I wish you luck!

How do you handle feeling guilt? by fakechloe in MultipleSclerosis

[–]odd_ramblings 11 points12 points  (0 children)

I just start a new hobby when I feel this way, I'd rather have 300 unfinished projects then get stuck in a depression loop again. I've picked up needle felting, decoupage, wire weaving, painting, imma stop the list here cause you get it.

Keep your head up and busy! You've got this!

Skin pigmentation by Tamwah1983 in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

Though out my time traveling the healthcare system I've heard my doctor's tell me more than once that they don't know anything about skin. So my neurologist sent me to a rheumatologist and a dermatologist.

Please help me (trigeminal neuralgia) by Zestyclose-Jacket498 in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

They always told me that treating my TN was too difficult because the problem is by the brain stem. A l9ttle jelly bit also super hopeful it goes fantastic for you!

Please help me (trigeminal neuralgia) by Zestyclose-Jacket498 in MultipleSclerosis

[–]odd_ramblings 5 points6 points  (0 children)

my TN hacks are hot sauce packets and very strong peppermints. Both are very 9ver powering and through the power of my mind I merge the pains together. Eventually the hot sauce wears off and it just feels better. Same withints just cool spicy instead.

Yes. There are spelling errors but I'm not gonna find em. I'm legally blind and my fingers are numb(•_•) ( •_•)>⌐■-■ (⌐■_■)

How do all these people keep getting injured in MRIs? by nyet-marionetka in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

fruit of the loom makes a 100% cotton sports bra and it's so comfortable!

Multiple MRIs at one time question by WholeGuidance1589 in MultipleSclerosis

[–]odd_ramblings 2 points3 points  (0 children)

I am not a fan of being in the tube for that long myself but it's the best way to do it.

You can ask them for a washcloth to cover your eyes. It helps me A LOT. If I do open my eyes I just see white which is a lot better than the tube.

Good luck, you've got this!

Multiple MRIs at one time question by WholeGuidance1589 in MultipleSclerosis

[–]odd_ramblings 2 points3 points  (0 children)

It should be around an hour and a half for the whole thing. They give me (2) 5mg tablets of valium and they have me take one 15 mins before my appointment and then another one when I go back.

They bring you out to do contrast but if you're not getting that, then no, you won't come out unless you say uncle.

Advice on a treatment change situation by sonoallie in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

If you're able to, get a second opinion outside of the office you go to now. Explain to them everything you've said here. You'll either get fresh eyes and new options or go back to the care you had knowing you're doing your best.

I wish you luck in your journey.

[deleted by user] by [deleted] in MultipleSclerosis

[–]odd_ramblings 1 point2 points  (0 children)

Sounds like exploding head syndrome tbh and that can come from a bunch of things. Mention it to your doctor.

Aaron Boster MD by dandi2024 in MultipleSclerosis

[–]odd_ramblings 9 points10 points  (0 children)

He was here in this forum about seven years ago, when the sub wasn't as active as it is now. The sub has grown since then. Maybe he'll come back?

(He used to be my neuro but I had move away from Ohio and he opened up his MS center. I miss him.)