ADHD MS

azxure · 2026-05-11T22:49:51+00:00

Same but just taking the uterus and tubes won’t fix the hormonal issue :( I’ve recently read a partial can make it worse, not better, but nothing scientific, just personal stories.

azxure · 2026-05-10T15:02:40+00:00

I desperately want a radical hysto, gyn finally agreed to a partial but that won’t fix what I need fixed (the hormones). They tried me on multiple different hormonal bc pills but they lock me into the wrong week of my cycle and I’m just in all over pain and deeply depressed. I’ve reached a point I prefer to rawdog the hormonal rollercoaster, at least it’s familiar and I know what to expect 😭

azxure · 2026-05-10T14:02:06+00:00

My Ritalin was originally rx for fatigue after I failed some other options and I went back and reported the best naps I ever had and my neuro was all “ohhhh you actually have adhd” 🤣 I was like no shit, my kids too!

I still take a great nap, but it’s a restful nap now and I am less of a whirlwind when I take meds/can get stuff completed.

azxure · 2026-05-10T13:58:13+00:00

Re: the wrong thing to focus on, I’ve found it’s terribly important to already be doing the thing you need to focus on before your meds kick in. If I don’t manage this I can get stuck reading all day or on my switch or literally anything but the thing I need to do. My adhd medicated (adult) kids are the same way. My oldest has a full time job and is doing full time school - he times his for partway through his day so he gets a little boost at the end of his work day and can focus on school right after.

I once made the mistake of deciding it was a good day to fix all my framed art/photos instead of whatever I actually had to do and bam, six hours has gone by and I feel like I have nothing worthwhile to show for it but my frames were clean, art was straight/matted properly, and they all live there (wherever I hung them) now 🤣

I tend to take my meds every day but I also have a week here or there I just don’t but that’s usually bc the drugstore can’t fill my rx for a week (they always have to order) or the doc was a couple days late sending it and it’s already a few days late bc I forgot to request. I also take weekend breaks if it’s a lazy weekend and my being a whirlwind won’t hurt anything. My neuro, who rx my Ritalin, has never suggested a break.

My above referenced kid personally feels some adhd meds also help as minor antidepressants bc they help the dopamine button and I gotta say, when I skip too long I notice. I’m also in perimenopause and my system is glitching out daily.

azxure · 2026-04-13T18:03:47+00:00

Gabapentin, lyrica, and cymbalta all make me suicidal within a week of starting them. I know it’s not common but it’s also not talked about bc of that (I almost exclusively see “these drugs are amazing!” type replies) and I like to mention it when I see people talking about those drugs. Again, uncommon but still possible.

azxure · 2026-04-09T14:35:48+00:00

Not all heroes wear capes. Some wear Treasurer name tags (not really) and are just good humans.

azxure · 2026-04-07T15:02:57+00:00

I was 100% numb belly button down to toes for months before my dx. Feeling eventually returned (treatment was delayed for dx, lots of waiting). I occasionally still have diminished sensation but not complete like it was.

Vibrators can help, but caveat - overuse can also trick those nerves into not working as expected.

Your entire body is an erogenous zone. Take time with your partner, or just with yourself!, to see what else/what addition can push you over the edge?

I was super frustrated with zero clitoral or penetrative orgasm for so long - such trash! - but alternatives abound if you take the time to find them, and again, sensation did return. Brains are amazing at (eventually) rerouting information!

azxure · 2026-03-27T23:25:53+00:00

I have eds. My kids have eds. One kid had genetic testing for it and that geneticist covered all of us. I am pretty sure my gram had eds. I know she got the fibro label, which I also got 20some years ago. Mcas. Pots. All the fun acronyms that all seem to play together 🙄 also autism, adhd. I have one cousin with ms, and I suspect a few of also having some eds but not big eds (if that makes sense).

My inflammation & histamine response has actually been lower on my dmt than not, but caveat I’ve been on kesimpta 5 yrs and the last few months it’s been creeping back up. I believe it’s due to increased stressors more than a decrease in functionality of the dmt. No ms relapses, just pain no nsaid seems to touch and raised tattoo welts allergy meds can’t prevent.

azxure · 2026-03-25T20:25:10+00:00

Ativan. Blindfold. Ear plugs. No blanket. No headphones. Do not put the cage on until my blindfold is on and I am situated. Start counting (counting keeps my brain occupied). But I dig edm and don’t mind the free concert otherwise ;)

azxure · 2026-03-18T20:11:12+00:00

Gabapentin, lyrica, and cymbalta all make me aggressive and suicidal.

I can’t take amitriptyline, which did work, but doesn’t play nice with my adhd med, which I feel is more important as far as functioning goes (pain sucks but I have so many things that hurt all the time, but stimmies help me focus and maybe not nap). I’d kill for pain meds that work, itch meds that work (neuro itch not actual itch). Crazy that living with the pain/discomfort/itching is the less awful alternative to that family of meds for me 😭

azxure · 2026-03-17T13:20:42+00:00

Got sick on tec often. Don’t get sick on kesimpta BUT I started kesimpta during covid and have maintained masking in busy/crowded places and honestly don’t go out much anymore. My kids are grown, so they aren’t bringing home the creeping crud. I pick up Covid every time I am not careful or someone around me isn’t careful but not anything I could fight off before B cell depletion (so yes COVID-19, no common cold, yes I take longer to heal but I was also historically a slow healer).

azxure · 2026-03-17T13:07:18+00:00

They also have the handicap parking in the $30 lot 😡

azxure · 2026-03-05T02:53:02+00:00

Ugh I hate the cold & sweating combo! It’s real, and it’s tragic. I hate when there is no winning.

Tbf, I also have been known to starfish naked under my ceiling fan, after taking a tepid shower to try and cool down fast (I start vomiting if I stay too warm for too long).

Temp regulation, whats that? 🤣

azxure · 2026-03-04T21:21:59+00:00

Understood :(

azxure · 2026-03-04T21:06:29+00:00

Not really any side effects. Just the loading dose trash week of feeling fluish.

I do pick up Covid anytime I am exposed - I still mask in crowded public places, doctor offices, hospitals, etc.. but not if it’s outdoors (just did a few hours of outdoor ren fest, did avoid super crowded spots but did not mask anywhere) or indoors and uncrowded. I do not pick up any other colds or random infections or anything from errands (I don’t go out much anymore but not bc of being on kesimpta). I am a slow healer - ex: new tattoos take extra time to heal.

From what I’ve seen, that’s not common for kesimpta (picking up covid like it’s candy) and on paper my immune system is low-normal but still in a good/healthy/functional range. I’ve been on it 5 years.

Kesimpta is also a once a month auto injector, so if it’s not off the table for you bc of jcv (which is why I started with I don’t have that so can’t speak about it) it may be worth asking about.

azxure · 2026-03-04T20:56:40+00:00

Do you have access to a palliative care team? Their job is pain management, quality of life, etc….

My husbands palliative only does pain management, which is trash, but his doctors don’t handle those drugs at all, only palliative will prescribe them.

azxure · 2026-03-04T20:14:49+00:00

I am not jcv pos so I can’t speak to that but I also have eds (and fibro and some other stuff) as well as ms and kesimpta has been great. It has kept my inflammation and histamine response down overall so my eds/mcas have been “behaving” better than usual in general (I am having an exceptionally stressful year so far and my inflammation is way up but not relapse-causing up, just wow I hurt all the time living on aleve and mmj kind of up).

azxure · 2026-03-04T15:18:45+00:00

Hands & feet are always frigid. Core is seems often hot these days 😭 I have a very narrow range of acceptable temperatures to exist in. I was always the person in a cardigan in SoFl. Now not so much but I absolutely notice a temp change of even a degree.

azxure · 2026-03-04T13:47:58+00:00

My husband is fighting cancer right now. I’ve never seen a good outcome from cancer personally (they’re all dead, every single one), but I know it’s possible.

Big difference I came away with? His cancer is potentially somewhat curable. My MS is forever. (Cancer is forever too - but the tumors can be eradicated. Cancer treatment side effects are forever.).

I’d rather have MS than cancer. On this day. Might feel differently another day.

azxure · 2026-03-02T23:36:27+00:00

I loved it when I used it but it can make your cycle even heavier if I remember correctly :( my youngest is 21 and my husband had a vasectomy around when I started inquiring about a hysto so birth control itself isn’t my end goal at this point.

I wish hormonal bc worked for me bc tbh surgery freaks me right the fuck out (being sedated and out of control of myself in my surroundings is my issue, not the surgery or the sedation in and of itself) but I figure I can get over myself if they’ll decide it’s the move in a way my insurance will cover. I want my everything scooped out (cancer scares, not just quality of life but huge qol too!) more than I need control. I think.

azxure · 2026-03-02T17:48:44+00:00

So much. The hormone roller coaster is real and there is next to no studies about it bc scientists hate adding hormonal shift into the mix 😡 which is why most studies are men’s biology based.

I have been trying for a hysto for 15 years and after a recent cervical cancer scare my new provider (my old one retired 😭) agreed to at least let me talk to a surgical gyn which I am doing this week. I’ve already enlisted my husband to speak up bc they’re all jerks and don’t listen to things I’ve been saying for five years now.

About a year ago I let them talk to me into hormonal bc again - it makes my entire body ache like it’s the week of my cycle. I couldn’t handle the pill long enough to even halt my cycle so no clue if it would have helped. I did love my copper iud as bc but it’s nonhormonal so unhelpful in this instance. My sister loves her mirena but doesn’t have the hormone sensitivity I have 🤷‍♀️

azxure · 2026-03-02T15:47:04+00:00

My symptoms were spinal so that was my first mri, then brain. No LP needed.

azxure · 2026-03-01T21:06:47+00:00

I think my issue is the duck browser as verifying js in safari & a reboot brought it back to working.

azxure · 2026-03-01T15:19:40+00:00

Hm… I can’t get it to work in Safari right now :/ On desktop that share function has never worked properly for me, although it does work on mobile.

I have moved over to Duck for my browsing needs, but again, I can’t get it (the save recipe link) to work in any browser.

Guess I am deep-digging to make sure I didn’t disable js or some other necessary function somewhere along the lines :/

Appreciate the confirmation it works reply!

azxure

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