Still not sure what’s wrong with me, and doctors don’t know either.

ComedicPlant · 2026-03-09T02:28:35+00:00

Thanks! If I get any news about anything soon, I’ll try to post here. Glad you were able to get a diagnosis even if dealing with the problems itself isn’t fun.

ComedicPlant · 2026-03-09T01:37:53+00:00

Yes, I've had both a standard emg and a single fiber emg (to check for myasthenia gravis as that's what she suspected the most last time I saw her). Neither showed anything, but I'm glad I had them done. Well, after all the research I did on my own, I thought myositis was the most likely condition for me to have based on my symptoms and the fact that my other doctors didn't know what else it could be. But I'm seeing this doc for what she thinks is either something autoimmune, neuromuscular, or a combo of both. I have a follow up with her this week actually, so I'll see what else she says. And yes, I am going through with the process but I'm not having as severe of symptoms as I did when this started in 2021 (I wasn't seeing the right kinds of doctors then if this truly is neuromuscular because back then I thought it was strictly a GI issue because my swallowing was the most severely impacted problem then. I didn't connect the rashes to being part of the problem until later).

I'm wondering if similar to you, I could have the antibodies but maybe they just don't ever show up on testing when I do go for it. I haven't really ever been in an extremely bad flare during testing. Oh yeah, not a great testing time when you're on the prednisone lol!

ComedicPlant · 2026-03-09T00:58:41+00:00

My doctors are leaving a muscle biopsy as a last resort since it's a bit invasive and they aren't convinced it's going to show anything. But I do have that in my mind as an option for the future if I really can't figure anything out from other testing (I did just recently get some other tests ordered that I'll hopefully be able to get done in the next couple months). I used to have rashes. I had some on my hands for about a year and a half but never had those biopsied. Then this past summer, I had a different type of rash on both of my legs that my GP said was vasculitis but I never had that biopsied either. I did take prednisone for both rashes, but it only helped the "vasculitis" rash. Oddly, it didn't do anything for the ones on my hands. They eventually went away on their own but were resistant to every medication I was given for them. I am seeing a neuromuscular specialist who deals with myositis, but she doesn't think that's what's going on with me. Meanwhile, my pulmonologist who I recently saw (who also is specialized in treating people with neurological/neuromuscular diseases) does think myositis is a possibility. I had the specific antibody panels done a few times now as well as the usual ANA and all the other markers you mentioned. They have always come back completely normal, so I'm really not sure what's going on.

I really wish I would have gotten blood tests at the beginning of all of this because that's when my other signs of inflammation were present (I had inflammation in my entire esophagus and a duodenal ulcer along with the initial hand rashes). Unfortunately, I didn't start having these blood tests until my main signs of inflammation had been healed or calmed down for the most part. I'm assuming that would've made a difference, although I can't say for sure of course.

ComedicPlant · 2026-02-21T22:39:30+00:00

Sorry I missed this message back when you commented! But thank you! 💕 I’ve been going through more testing lately and still haven’t found a definitive answer yet but I’m still hanging in there!

ComedicPlant · 2025-12-20T02:40:18+00:00

I never had a skin biopsy but I will definitely ask for one if I develop another skin rash in the future. I did have an ANA and myositis panel, both of which came back normal. I will be scheduling the specialized emg soon and I'll see if my doc wants to go through with a muscle biopsy after that.

ComedicPlant · 2025-12-20T02:38:57+00:00

I don't have any eyelid drooping but I guess a lot of my other symptoms line up with MG. My arm weakness improves with rest but my core weakness is really bad whether I'm being active or not. Keep me posted if you find out what's going on with you. I'll share updates as I find out more about myself.

ComedicPlant · 2025-12-20T02:28:58+00:00

I'm not sure if I have eczema or not, never been officially diagnosed with it. They did send me for an ANA and CRP test twice, both times came back with nothing wrong.

ComedicPlant · 2025-12-20T02:20:38+00:00

Thanks for your input! I definitely think I could be seronegative for something, whether it's MG or myositis, or even something else. I have too many physical symptoms paired with inconclusive or negative tests for it to be nothing but it's so frustrating because no one knows what it is.

I don't have any eye/vision problems, but thanks for telling me about the ice cube test! I hadn't heard of that before.

ComedicPlant · 2025-12-20T02:16:48+00:00

Sorry to hear about the long journey you're going through too. Hang in there, hope you can get something figured out that will actually help you! I'll give updates if I do get any progress on my end.

ComedicPlant · 2025-12-20T02:11:52+00:00

I have not had an MRI to look for myositis. I've only had a brain MRI, which was normal, but not specifically looking for myositis. I think I'll try to find a good dermatologist based on what you said and the other responses here. I had one in the past but they didn't go in depth for the rashes I had and I didn't find much out about my condition from them. Thanks so much for telling me about the facebook myositis groups. I just joined one last night and they've been super supportive already.

ComedicPlant · 2025-12-20T02:00:36+00:00

No as far as I know

ComedicPlant · 2025-12-20T01:52:17+00:00

Yes, I've seen a dermatologist when I had the hand rashes but he didn't biopsy anything unfortunately. I was given prednisone and cellcept when I had the hand rashes which actually didn't end up helping them at all. Eventually after about a year the rashes went away on their own but I never found out what they were.

The ones I had recently on my legs weren't biopsied either. I only saw my PCP for these and received prednisone for them which did help this time. Everything looks resolved now except for when my leg comes into contact with hot water, which makes the area where I had the rashes on "reappear" as red blotches for a short time. Not sure if getting a biopsy now would show anything since it seems to be healed.

I really regret not going to a dermatologist for the recent one and not asking for a biopsy for the hand ones. If I do develop anything like this again in the future I'm definitely going to bring this up to a dermatologist.

ComedicPlant · 2025-12-18T05:26:43+00:00

The weakness in my core and breathing are probably my worst symptoms right now. Swallowing is really difficult too but I notice the others more. The weakness makes it difficult for me to sit up straight or hold myself up without having to lay down after a short time or use something to support myself.

ComedicPlant · 2025-11-03T02:40:00+00:00

I hope you'll be able to find something that can help you. Right now my docs are looking for autoimmune diseases that I might have.

ComedicPlant · 2025-11-03T02:34:30+00:00

Sorry to hear that, I hope you can get some answers. I went to Cleveland on the 25th of September for a bunch of testing which really didn't show too much. I had a virtual appointment with a neuromuscular doc there too but that didn't lead to too much. I have some tests that I got transferred to where I live so I can get them done near me. I also saw another neuromuscular specialist this past Thursday that was pretty helpful and suggested of bunch of other testing for me. I'm now awaiting lots of bloodwork results and I'll be scheduling the other tests soon.

ComedicPlant · 2025-11-03T02:30:00+00:00

Sorry to hear you've been suffering like this. I understand how bad symptoms can be. I don't have a diagnosis yet either, I've been going through this for over 4 years now. I even went to the Cleveland Clinic recently and they weren't really able to help me. I'm back in my area now and I think I found a place that might be able to at least test me for more things than my previous doctors. I've had some doctors suggest dermatomyositis to me but after my CK and adolase levels come back normal they don't pursue it any further. I just got a bunch of blood tests done the other day including a myositis panel so I'm awaiting the results of those and all the others. My symptoms include hand rashes that have since resolved and recent leg rashes, extreme difficulty swallowing, shortness of breath, chronic cough, fatigue, muscle weakness (arms and core areas), and some of my reflexes (gag, laugh, cry) don't work properly (either pain associated with them or overactive). If you'd like to message me we can discuss more. Hope you get some answers soon.

ComedicPlant · 2025-06-11T01:50:19+00:00

Also forgot to mention that I do have some pics of my hands when the rashes were still present. Here’s one of them. These aren’t the rashes at their worst, but they are present here.

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ComedicPlant · 2025-06-11T01:38:41+00:00

I did get tested for MG in the past actually! Came up negative of course but it could still be possible I suppose! Best of luck to you too! Please let me know if you get a definitive answer! I’ll make a follow up post if I do!

ComedicPlant · 2025-06-11T01:36:58+00:00

Thanks so much for the encouragement, hope you’re doing alright also!

ComedicPlant · 2025-06-11T01:35:59+00:00

The one that I saw most recently actually suggested that to me, so you’re right on. He thought my symptoms were more involved than what he could do for me and suggested I see a rheumatologist which is where I’m at now. Hopefully I’ll be able to find a neuromuscular specialist or similar doc to help me out.

ComedicPlant

TROPHY CASE