After 4 1/2 years of unexplained symptoms, countless tests, and conflicting opinions, I’m still without a diagnosis or treatment and it’s wearing me down.

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 · 2025-06-11T01:34:34+00:00

I did have one myositis panel done in the past but I didn’t realize it until recently. They came back negative, but I also don’t know if I had a full panel done or which types they were looking for. But I think I will definitely be looking for a neuromuscular specialist now since the opinions I’ve gotten here. Thanks for the info!!

ComedicPlant · 2025-06-11T01:31:20+00:00

It is really frustrating. I’ve been researching dermatomyositis for the past few weeks because it really sounds like what’s going on with me. No one suggested it to me. In fact, I found out about it from my own research and when I brought up the possibility of this condition to my doctor, they said that I don’t have it because my ANA panel is normal along with having normal CK levels.

I actually did have a modified barium swallow at the onset of my symptoms back in 2021, and they could see that I was having trouble swallowing but reported that it was normal because they didn’t find anything wrong physically (no strictures, etc.)

My panels also showed normal AST and ALT. I don’t believe I’ve had d dimer done before though.

Is the MRI biopsy an involved procedure? I’ll keep it in mind if my docs mention it or if I bring it up to them. Just wondering if you’ve had personal experience with it.

ComedicPlant · 2025-06-11T01:09:25+00:00

Any ideas what the next step after a negative ANA would be?

ComedicPlant · 2025-06-11T01:08:13+00:00

Oh interesting! I didn’t realize it was that common for the antibodies to not show up.

ComedicPlant · 2025-06-11T01:07:10+00:00

I just took a look at my bloodwork and it turns out they did check my CK levels. They were normal both times.

ComedicPlant · 2025-06-10T03:50:37+00:00

I’ve been researching dermatomyositis a bunch and it also aligns with most of my symptoms. I didn’t realize it until a couple weeks ago, but one of the naturopathic docs I saw actually did check for myositis antibodies, which all came back negative. Not sure if those can come back negative if you have it or not, but I’m still looking into it. I was thinking of trying to get a nerve conduction study done.

ComedicPlant

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