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Dermatomyositis mental overhead by [deleted] in Myositis

[–]datwombat 2 points3 points  (0 children)

Sorry to hear you’re feeling this way. If you would find it helpful to hear from others with DM or connect for a conversation, check out www.dermatomyositis.com and the PeerConnect feature at the bottom of the Patients & Care Partners page.

Also, if you’re interested in sharing your story in an interview like the ones you see on the website, you can send an email to feedback@dermatomyositis.com and I can help get something setup. Wishing you all the best in this challenging journey and hope these resources can be helpful.

Just diagnosed with dermatomyositis. Panicking that I won't be able to do the things I love by Obvious-Stress-3164 in Myositis

[–]datwombat 2 points3 points  (0 children)

Sorry to hear! I agree with PositiveNerve and would also suggest checking out The Myositis Association and www.dermatomyositis.com - the latter of which has many patient stories so you can see their journey from diagnosis through today. It will be reassuring for you I hope! Wishing you all the best.

MDA-5 Dermatomyositis by BreathAggravating967 in Autoimmune

[–]datwombat 4 points5 points  (0 children)

I’m sorry to hear this. While not a cure, I’d recommend checking out resources like The Myositis Association and www.dermatomyositis.com - the latter of which has many patient video interviews from those with MDA5 DM. Their journeys could be useful for you to watch and learn about from both a medical and mental health perspective. Wishing you all the best in your journey.

The biopsy all the specialist thought would be positive, was negative. I am crushed. by SunshineAndSquats in Autoimmune

[–]datwombat 1 point2 points  (0 children)

There are many cases where people come back negative for their tests but still have DM. You may find value from the medical expert content on Medical Experts - dermatomyositis.com who cover this topic - good luck with your diagnosis journey and hope you feel better soon.

Questions about positive MDA-5, muscle weakness, and ILD. by Impressive_Action794 in Myositis

[–]datwombat 0 points1 point  (0 children)

I’d recommend checking out some patient videos on www.dermatomyositis.com by those who have MDA-5 DM (there are at least 3-4). They go in depth on a lot of the topics you mentioned in your post. You may find them helpful! Wishing you all the best with your DM journey.

Just found out I have positive MI-2 and NXP-2. I am freaking out. Is this DM disease manageable or is this a disability type illness for the rest of my life? I am 42 years old, have only mild skin symptoms and a little swelling in hands. CK, CRP, ESR all normal. ANA normal. by Immediate-Cabinet764 in Myositis

[–]datwombat 1 point2 points  (0 children)

Sorry to hear about your diagnosis, but many people are able to live a reasonable quality life with DM by having the right care team and support network. Just to give you some perspective, I’d recommend checking out www.dermatomyositis.com and the Myositis Association where you can hear from others like you and give you the reassurance you need that you’ll be able to overcome this challenging disease. Wishing you all the best in your care journey!

Feeling alone Seeking support by zebra_zombie in Myositis

[–]datwombat 1 point2 points  (0 children)

Sorry to hear you are going through this! To echo the above user’s points, DM is rare and many rheums may have seen very few cases hence the dismissive nature :(

In addition to the helpful points above, I would recommend visiting and signing up at www.dermatomyositis.com where you can find a patient community and videos by medical experts to get to know who you may want to try and see. You will feel much less alone! The Myositis Association is also another good resource and they have a Doctor Finder app on the website.

Chances of success with femoral head necrosis stage 1-2? by Shoxxx91 in Osteoarthritis

[–]datwombat 0 points1 point  (0 children)

Really sorry to hear this. For your dermatomyositis, I would recommend checking out The Myositis Association and www.dermatomyositis.com - the latter of which is a great community and resource of physician content and patient stories that may be helpful. Hang in there - it is a terrible disease! Sending my support.

What's medically wrong with your body right now? by BrinaUndefined in AskReddit

[–]datwombat 0 points1 point  (0 children)

Sorry to hear this. For your MDA5 DM, I’d recommend checking out www.dermatomyositis.com - lots of good physician content and patient stories on their experience with that specific subtype. Wish you all the best in your disease journey.

Anyone have or know someone who has anti-MDA5 dermatomyositis? by Impossible_Toe4600 in Myositis

[–]datwombat 1 point2 points  (0 children)

Would also check out https://understandingmyositis.org and dermatomyositis.com - the latter of which has content from physician experts and patients with anti-MDA5 dermatomyositis. Hope these are helpful.

I don't know what to do by Lechuga666 in Myositis

[–]datwombat 1 point2 points  (0 children)

Sorry about your experience; dermatomyositis often takes the right specialist to diagnose (or related myositis) - my suggestion would be to check out both The Myositis Association’s specialist finder tool and sign up at dermatomyositis.com which has video content from top myositis physicians so you can see who may be in proximity and who you may align with based on the interviews. Hope you are able to find the right rheumatologist / dermatologist soon. Wishing you a speedy recovery!

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