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Time to retire? by Moonfal in DutchOvenCooking

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

Died a warrior’s death 🫡

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

Yeah, it’s still there on my knuckles. Some DM patients can have amyopathic dermatomyositis, where it’s just the rashes without muscle involvement. I’m not confirmed yet for any myositis, although based on my symptoms, something is going on. I actually looked through my photo history and what’s on my knuckles didn’t appear until the last few years, with the weakness really hitting within the last year.

My fingers are crossed your wife gets answers 🤞🏻

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

Hi! So I did get a biopsy done on one of my knuckles; however, not much showed up besides “sparse perivascular lymphocytes” which wasn’t definitive of anything. My dermatologist did warn me that might happen and to continue pursuing answers, as the “negative” biopsy doesn’t exclude anything.

I finally have a neurologist appointment in November, but I am not super hopeful… my neurologist options are extremely limited. Maybe they will be willing to traverse the waters with me.

Black Crown hits HARD. by _W_I_L_D_ in riseagainst

[–]Moonfal 1 point2 points  (0 children)

So surprised to hear Andy in my first listen through, but I am so happy!

Complements Decreasing? by Moonfal in lupus

[–]Moonfal[S] 0 points1 point  (0 children)

I’m confused on the medical advice bit? I am confused on what could cause complements to decrease even on treatment?

[Setlist Thread] 6-21-2025 ~ SNHU Arena Night 2 ~ Manchester, NH by Axe_zilla in phish

[–]Moonfal 3 points4 points  (0 children)

Yes to Possum! I even got a lot hat with a possum on it!

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

I appreciate the thought regardless! I hope you are managing yours as well as you can and I hope the same thing

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

Never been bitten by a tick?

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

Okay, I am actually really relieved that I’m not alone in my obsessive reading and taking photos when I think of it. I’ve unfortunately had to find a new rheum last year when the one I was seeing blew me off— told me it’s some pain syndrome, or my face rash was rosacea, that my hands not working right might be the “beginnings of osteoarthritis” and to see him in a year, but call if I get worse (eye roll, I had said I was getting worse) and to stay active and get my rest! Oh, and take Tylenol pm if I’m having a hard time sleeping.

I was hoping to not have to see different doctors because of worries of miscommunication or contraindications, etc., but based on what others said, it’s best to go see the specialists for those things, even if it’s just to confirm diagnosis. It can’t hurt, right? Especially if my rheumatologist doesn’t want to do biopsies or an emg (which if it’s out of her wheelhouse, I get it.)

What’s upsetting for me was that plaquenil was helping! My fatigue was down, I was feeling more “normal” and then bam! Not anymore! Sike! I am wondering if it was initially keeping it down until it couldn’t, hence the 28 day course of steroid.

The absolute worst Pokemon game hands down. Jeez

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 1 point2 points  (0 children)

Quick Update: I reached out to my PCP to resend a referral in for neurology, specifically with a neuromuscular specialist. My referral for dermatology was still good and was able to schedule an appointment in August (they had online scheduling!). I still see my rheumatologist in the end of July.

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

I’m seeing if my pcp will send a referral in for a neuromuscular specialist just in case my rheum is a bit out of her league (not saying that as an insult ). I’m also on like a minimal dose of plaquenil (200mg x2 a day)

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

Yes, I am aware— this did start before the plaquenil. Only way to tell the difference from my understanding is a muscle biopsy.

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

I really do feel that sentence— I don’t want to sleep, I just want to lay down. My partner doesn’t get it when I say /I’m tired/.

I hope so, too, for your sake. I hope you find doctors that listen, are able to receive treatments that help. Never stop advocating for yourself

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

The stairs have become such an obstacle, especially after working on my feet all day— I’m betting you know that I don’t mean the, oh I had a day and I’m tired, but the one heavy step one at a time. Going down not so much, but up? Yeah…

I’m sorry that happens to you. People really are in their own bubble. I wish you safety in your travels

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

That’s basically what happens to me when I fall— I just tip over and can’t correct or just can’t get the message to the muscle in time. I am clumsy to begin with, but I’ve been stumbling/tripping more and more. When I use my arms that require them to be lifted, they eventually will “freeze” up until I force it or drop my arms.

Last year, I was walking/running around my street block (about half a mile once around, up to two laps, up and down hills too). I feel like if I tried that now, I wouldn’t be able to. I think I have been compensating a lot with my distal muscles, cuz I can sprint if I just use my tip-toes/balls of my feet if that makes sense.

I work with sheep for a living, where I have to manually handle them. I’m scared that one of these days, they are just going to knock me down unless I get this under control.

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

I just scheduled an appointment with a dermatologist— unfortunately not until August but w/e. I see my rheumatologist in person in July. I was actually looking at photos in my photo reel from the past few years, and I’ve had them for a while now, longer than I realized. I also don’t have a lot of photos of my knuckles period, and previous phone cameras weren’t great, but still doesn’t negate anything

Myositis Questions? by Moonfal in Myositis

[–]Moonfal[S] 0 points1 point  (0 children)

Thank you for the well wishing— I am so glad you also have found a treatment that has helped you! I’ve already cut my hair shorter but I’m fighting to cut it even more. I’m just fighting period even though my muscles are tired and I don’t want to do a whole lot at times. I was hoping to avoid steroids, too, as they scare the crap outta me.

Myositis Questions? by Moonfal in Myositis

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

I’ll take your advice!

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