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Skin biopsy

Kristen1108 Message
17 Jul 2014, 07:05 AM

Hi everyone, Has anyone had a skin biopsy that showed vacuolar interface dermatitis with mucin deposition? I had one a few months ago with that result. The dermatologist said it's only seen in lupus and dermatomyositis. He said no one thinks I'm getting lupus (only because my ANA has never tested positive). Despite my Jo-1 antibodies, he said I don't have dermatomyositis because they looked everywhere for muscle inflammation and didn't see it. A year ago I had weak legs. Walking up stairs or kneeling was very hard. Tricep weakness followed last fall, making it hard to hold the steering wheel or a book even at times. That's improved with prednisone and Cellcept. I have lost my esophageal motility and have tight ankles and wrists. My hands have stiffness and some nerve damage/possible fibrosis. Those problems resemble scleroderma. The dermatologist said the skin biopsy result is never seen in scleroderma. My diagnosis would be MCTD if I had the antibody for it, which I don't. So my diagnosis is overlap syndrome. If my hands get too cold, I have Raynaud's attacks and then the mechanic's hand-type splitting starts. Since that's a hallmark of AS syndrome, it makes me wonder about my diagnosis. My rheumatologist is clear that I don't have AS. She said my disease is unique to me. I thought I'd ask our group here about the skin biopsy, just in case others have had a similar finding. Blessings to everyone, Kristen
doreen Message
18 Jul 2014, 12:22 PM

Kristen, Although my husband has never had a skin or muscle biopsy, I was wondering what kind of skin problem that you have that prompted your dermatologist to perform a biopsy? The reason I ask is my husband has had so many problems with his skin with lesions that pop up, almost like small, red, scab-like sores. He is also on Cellcept. Thank you for any info, Regards, Doreen
Kristen1108 Message
18 Jul 2014, 02:47 PM

Hi Doreen, I have telangiectasia on my face, chest, and limbs. I get raised red areas on my knuckles if I'm in the sun or exposed to fluorescent light (particularly while waiting in doctors' offices, under their ceiling lights). My chest has had a tan V-shaped area for months. It was much darker a few months ago, when I had just started the Cellcept. My face gets very flushed too. The biopsy was taken from my chest. Hope that helps. Have a good day. Kristen
Kellyb Message
19 Jul 2014, 05:09 AM

It seems most of what we experience is outside of what docs know or expect us to have. It is my understanding that if you have tested positive for Jo-1 or any of the AS autoantibodies, whether or not you have disease activity, that is an AS diagnosis. Three years after I was diagnosed with AS, I was diagnosed with DM via a muscle biopsy from my forearm. I had been losing all the muscle strength in my hands and wrists. They were shocked at the DM results as they didn't beleive it attacked the distal muscles. I also had what was thought to be roseacea on my face and chest for the last decade but now I'm wondering if that was early signs of the bigger picture of AS and DM. Did the doc suggest any different treatment other than what you're already doing? I think in another few years AS, DM, Overlap and MCTD will be reclassified due to the emerging larger list and documentation of all the ways it attacks our bodies. And I'm hoping more ways to combat it too. Sorry you are left juggling this new set of perplexing information. I don't know about you but I am finding "unique" and "rare" two words I don't want associated with my medical history! I am deeply grateful you shared as the more we gather about our collective experience, the better we'll all be. kelly
Kristen1108 Message
19 Jul 2014, 06:01 PM

Kelly, Thank you so much for your post. I did a Google search last night for the criteria for AS syndrome diagnosis. What you wrote is what I found: the diagnosis should be AS syndrome if you have the antibody. When I first tested positive for Jo-1 last fall, I researched it and came across AS then. I read that Jo-1 is exclusively seen in PM and DM. Because of my leg weakness, the rheumatologist diagnosed me as having Jo-1-positive PM and started prednisone and CellCept. I've recently tapered off the prednisone. The rheumatologist has insisted I do not have AS. She did say my hands resembled mechanic's hands, and my neurologist said that, too. But then she repeated I don't have AS. She believes a patient must have documented myositis as well as ILD to have AS. I am seeing her again in 2 weeks. She's at Stanford, which has probably intimidated me into thinking she's right about what she tells me. :) She did present my case to grand rounds -- and the collective rheumatology decision was that I had a neuromuscular disorder and was probably getting scleroderma. I think they're stumped because my MRIs and EMGs have been normal. I read last night that AS patients can have normal EMGs and MRIs yet still have weakness. I've been working with a hand PT since January because I was losing so much function. I can now carry a coffee cup for 15 minutes without having to switch hands or grip it in the crook of my arm, pressed against my chest. So I do see improvement. The hand PT has been puzzled by the weakness in my pinky fingers. The EMG I had in March said everything was normal. The hand PT repeatedly requested my EMG report and finally got it this week. I saw her Thursday and got to see the report. My deltoid muscle had something called short-duration MUAP, but everything else was normal. The report said that was the only myopathic finding. So is that normal? The other crazy thing is that the doctor who did the EMG didn't test my ulnar nerve along the pinky side of my hand, where the weakness is. I showed it to him. The introduction to my case on the EMG report says I have this problem. He tested the ulnar nerve near my thumb, where it's not affected. So the hand PT says it will need to be repeated. I'm so frustrated by this whole endeavor. Why can't things be done correctly? And when my rheumatologist presented my case to grand rounds, she didn't tell them about my esophageal motility problem, which we had learned about two days earlier. She somehow didn't see that message from the GI doctor. I had made so many phone calls trying to make sure she knew. The GI doctor even went upstairs (since they're in the same building at Stanford) and spoke to her assistant. The assistant called me to refer me to the scleroderma-genius dermatologist at Stanford and said, "We know you got your esophagus results today." How much more can I do as the patient? Enough venting. I feel better. :) I also read last night that AS can ruin the motility in the distal part of the esophagus, which is exactly where mine has been lost. I have closer to normal motility in the proximal esophagus (or the top 1/3, near the throat). Food does get stuck in my throat still, but the lower part is really a problem now. I can't eat sandwiches, for example. My shortness of breath is linked to food being stuck in my esophagus. Last week I had a sudden fast and irregular heart beat for 10 minutes. It was 147 on my BP machine. I'm wearing a heart monitor now. The PCP said last week that probably my esophagus had a spasm, and that sent the wrong electrical activity to my heart. I hope that's all it was. Does anyone have this? About the skin biopsy (and sorry this is so long, but Kelly, you're right that we need to share our information), I read that photosensitivity in AS can cause a rash seen in lupus or dermatomyositis. That's exactly what my biopsy was. Here are three papers I read: Does anyone have experience with UCSF rheumatology? Blessings to all. I'm deeply grateful we have each other. Kristen
Dsroufe Message
8 Feb 2015, 06:40 PM

Kristen, I have AS, ILD, skin condition ( I think Durhing's Disease), now problems with esophagus. I go to UCSF ILD clinic, Rheumatology clinic, Dermatology clinic and see Dr. Lee a GI. I see Dr. Ginsler at the Rheumatology clinic, I would highly recommend her. Thanks, Dave
Kristen1108 Message
8 Feb 2015, 10:54 PM

Hi Dave, Thank you so much for the information! Since I posted my original message, I've been evaluated by two more neurologists, including one at UCSF (Dr. Poncelet). I also had my medical records sent to the NIH to enroll in an AS study. Everyone has independently agreed that rather than AS, I have scleroderma, despite the Jo-1 antibodies. I had a low positive result for Jo-1, so maybe that's why. I have bilateral ulnar neuropathy on EMG/NCS, and the only other abnormality is that my EMG shows multiple muscles with low-amplitude signals with decreased interference patterns. This is like a foreign language to me. :) But somehow it's scleroderma. Anyone have something similar? Blessings and good wishes to all, Kristen
AmSun Message
11 Feb 2015, 03:57 AM

I have ASS with ILD, reacted to cellcept so tried imuran, but did not respond to it so have been receiving cyclophosphamide for 5 months now and am finally not getting worse. As many do, I keep looking for resources and would encourage all who are seeing traditional doctors to continue to, but to also seek out someone who is certified in functional medicine. There are also 2 great books, The Immune System Recovery Plan by Susan Blum, MD, MPH, & The Autoimmune Solution, by Amy Myers, MD, which provide great advice on working to alleviate the root causes of autoimmune diseases. Mary
cboyer68 Message
20 Feb 2015, 07:01 PM

I have ASS with jo-1 antibody PM/DM and ILD along with poly-arthritis..severe hand deformities along with arm and shoulder weakness. several skin issues but no one seems concerned since my overriding issue is my lungs. I agree with AmSun.. I have read the autoimmune solution and taken action with my diet and has helped greatly with my complaints..along with several vitamins to support my bodies normal functions. I am hopeful that we are on the right track..good luck to all