I am new to this group, and have yet to receive a "definitive" diagnosis (frustrating), but am working on it with my doctors. I am wondering if anyone has rashes similar to mine? I'm going to attach one (knees) - hopefully I do it right, lol.
Thanks all.
61-053.JPG (3.37 MB) 62-054.JPG (3.29 MB)Hi-
Sorry you are going through this. I have dermatamyositis. Are you on Facebook? There are some great groups on there-and posted pictures of rashes. You might also see some pictures on myositis.org One FB group is called polymyowhat. : ) I don't think dm manifests itself on the knees like that-but I am not a dr.
Hello!!
I have Dermatomyositis, and never had a rash quite like that on my legs. I had a rash similar on my eyelids...do you happen to have it anywhere else and are you experiencing any other symptoms?
I have been having rashes on my legs and other random areas but the docs are stumped, even after a biopsy. They've claimed it's DM, fungal and or eczema...so basically, they have NO idea, but it doesn't look like yours.
Keep us updated and I really hope you get your diagnosis very soon!!
Hi LegoGal, thanks for your reply. Yes I am on FB, so I will definitely check out the groups. Thanks for the tip and be well!
LegoGal said:
Hi-
Sorry you are going through this. I have dermatamyositis. Are you on Facebook? There are some great groups on there-and posted pictures of rashes. You might also see some pictures on myositis.org One FB group is called polymyowhat. : ) I don't think dm manifests itself on the knees like that-but I am not a dr.
Hi Nichole, thank you for replying. I do have rashes elsewhere, esp. lower legs, ankles...and livedo reticularis (purplish mottling of the skin - ugly).... i go through random periods of severe fatigue and weakness, and also chronic pain, extreme at times (mostly neck, thoracic and sacral regions). It's all so weird and frustrating!!! I'll try to attach another pic...
And thank you so much for the words of encouragement! :)
Hello!!
I have Dermatomyositis, and never had a rash quite like that on my legs. I had a rash similar on my eyelids...do you happen to have it anywhere else and are you experiencing any other symptoms?
I have been having rashes on my legs and other random areas but the docs are stumped, even after a biopsy. They've claimed it's DM, fungal and or eczema...so basically, they have NO idea, but it doesn't look like yours.
Keep us updated and I really hope you get your diagnosis very soon!!
Ah, wow, hopefully you're scheduled for a muscle biopsy...
I'm with LegoGal, FB groups are great, I belong to a few myself (Myositis Ramblers and Dermatomyositis) are my two main ones.
Anytime you wanna chat I'm here. If Myositis or something else, I will send positive vibes to you that they get the proper diagnosis for you.
chimeraskeep said:
Hi Nichole, thank you for replying. I do have rashes elsewhere, esp. lower legs, ankles...and livedo reticularis (purplish mottling of the skin - ugly).... i go through random periods of severe fatigue and weakness, and also chronic pain, extreme at times (mostly neck, thoracic and sacral regions). It's all so weird and frustrating!!! I'll try to attach another pic...
And thank you so much for the words of encouragement! :)
Nichole Smith said:Hello!!
I have Dermatomyositis, and never had a rash quite like that on my legs. I had a rash similar on my eyelids...do you happen to have it anywhere else and are you experiencing any other symptoms?
I have been having rashes on my legs and other random areas but the docs are stumped, even after a biopsy. They've claimed it's DM, fungal and or eczema...so basically, they have NO idea, but it doesn't look like yours.
Keep us updated and I really hope you get your diagnosis very soon!!
hi nichole, nope not scheduled for a muscle biopsy yet... been thru the ringer with idiot doctors... one boston neurologist told me i was having chronic pain because "humans weren't meant to walk upright." yeah, that was classic. One orthopedist implied that I just need to use a treadmill, and another told me "well you're just getting older, you know, approaching 40....." I told him I'm only 32... he just shrugged his shoulders and and sent me on my way. Thankfully my GP is working with me and she validates me, which is so important. I hope you have good doctors on your side .... idk, most of the time they just look at you like you're crazy!!!!!
But thank you so so much for being supportive and sending some good energies! Please feel free to throw me a toot anytime! Take care for now. ...hoping for a good day tomorrow!
Nichole Smith said:
Ah, wow, hopefully you're scheduled for a muscle biopsy...
I'm with LegoGal, FB groups are great, I belong to a few myself (Myositis Ramblers and Dermatomyositis) are my two main ones.
Anytime you wanna chat I'm here. If Myositis or something else, I will send positive vibes to you that they get the proper diagnosis for you.
chimeraskeep said:Hi Nichole, thank you for replying. I do have rashes elsewhere, esp. lower legs, ankles...and livedo reticularis (purplish mottling of the skin - ugly).... i go through random periods of severe fatigue and weakness, and also chronic pain, extreme at times (mostly neck, thoracic and sacral regions). It's all so weird and frustrating!!! I'll try to attach another pic...
And thank you so much for the words of encouragement! :)
Nichole Smith said:Hello!!
I have Dermatomyositis, and never had a rash quite like that on my legs. I had a rash similar on my eyelids...do you happen to have it anywhere else and are you experiencing any other symptoms?
I have been having rashes on my legs and other random areas but the docs are stumped, even after a biopsy. They've claimed it's DM, fungal and or eczema...so basically, they have NO idea, but it doesn't look like yours.
Keep us updated and I really hope you get your diagnosis very soon!!
You have GOT to be kidding me? Those doctors are out of their minds! Hopefully she gets you to a great Rheumy or Neurologist, not that quack you went to.
Luckily (sort of) my legs swelled up to about 3 times their size and I could barely walk or get into my car, so my GP put me in the hospital to force the Rheumy who refused to see me until 6 months later to see me sooner. That's when he took me seriously and tested my blood, found my CPK up in the 11,000's which I don't know how much you've been told, but that's your muscle damage number and should be under 200-ish, so I was in heart attack mode. Then the biopsy and EMG.
I really hope you push for the tests or whatever you may need! I'll keep in contact and you do the same!!
If 32 is close to 40 I'm really screwed because I'm 37, so I'm pushing 50! Crap! LOL!
OH yeah, absolutely ridiculous!!!! I do have an appt with new rheumy and neuro... hopefully they're not idiots. I can't believe what you had to go to just to be taken seriously.. that is a sin.. It's like you have to be bleeding from they eyeball for a doctor to notice that something is wrong! I hope that you are doing better now!
Last March, I went to my doc complaining of weakness and jello legs.. they tested my CPK and liver enzymes... CPK was 3,128 and liver enzymes were high (SGOT, SGPT). They tested every week or so after ... CPK gradually came down to about 1,300 , then about 500, then 134 (normal). So the doc told me it was probably just a virus. But I looked back at my med chart (I could see all blood test results), and noticed that it was slightly elevated again in May, but they never addressed it or told me. I also saw that since March, my liver enzymes went up and down, from normal to elevated. They never told me that either. Maybe they didn't think it was important?
This past week for a few days I was having severe weakness and jello legs again. My doc tested blood again, but it was normal. Does your CPK go up and down, normal to high, high to normal? I'm just trying to understand this crap.
I had an EMG, which was normal, but never a biopsy. So confused.
Oh, and now I am 36... that ortho appt was a few years ago, haha. So I guess I'm pushing 50 too! LMAO!!
Be well and have a good night!
I'm so glad you have an appt. with a new rheumy & neuro, I hope they are great, push for answers.
Your doctors should have addressed your elevated numbers with you each time, it's your right to know. I keep an excel sheet with mine just to keep track.
Mine do go up and down, definitely. And there are plenty of people who have normal CPK numbers while they are in a flare. Which makes it hard for the doctors to "prove". I'm surprised the EMG didn't find anything, but that happens. The biopsy seems to be the "ultimate" determining test.
Look at us, too lil old 50 year old ladies yapping about our medical problems ;-)
If I don't hear back from you tonight, you also have a good one!
Chimeraskeep, have you been evaluated for systemic lupus? These rashes are more typical of lupus, as is livedo reticularis. Lupus and myositis sometimes overlap, and our members may receive both diagnoses.
haha, nichole! Yeah we are what you say, lol! I agree with you about the cpk levels... i figured people w/ DM have normal levels too, so I was not too happy when they just brushed it off as something viral.
I did read on a website a few days ago that EMG is not always reliable b/c people with DM can have normal results, sssoooooo, next. Sorry didn't get back to you sooner... had a crap night, but I'm OK now. : )
Take care and talk to you soon!
Nichole Smith said:
I'm so glad you have an appt. with a new rheumy & neuro, I hope they are great, push for answers.
Your doctors should have addressed your elevated numbers with you each time, it's your right to know. I keep an excel sheet with mine just to keep track.
Mine do go up and down, definitely. And there are plenty of people who have normal CPK numbers while they are in a flare. Which makes it hard for the doctors to "prove". I'm surprised the EMG didn't find anything, but that happens. The biopsy seems to be the "ultimate" determining test.
Look at us, too lil old 50 year old ladies yapping about our medical problems ;-)
If I don't hear back from you tonight, you also have a good one!
Hi dancermom, thanks for replying. Yeah they've run blood tests, pretty much everything I think... ANA and SedRate always normal... many who've seen my skin have asked the same thing as you have. So it has been very frustrating! I have heard that there is no definitive blood test for Lupus, though? not sure.... but whatever is going on, it seems to be hiding! And yes it seems that many of these diseases overlap. My GP said to me that maybe you have some disease that we don't even have a name for. Ha, food for thought I guess.
If I may ask, have you been diagnosed w/ DM, Lupus, or even both?
Hope to hear back from you. Take care.
dancermom said:
Chimeraskeep, have you been evaluated for systemic lupus? These rashes are more typical of lupus, as is livedo reticularis. Lupus and myositis sometimes overlap, and our members may receive both diagnoses.
My son was diagnosed with cutaneous lupus last year, chimeraskeep, so I spent some time on the lupus community. I do not have DM, but have volunteered on a number of Ben's Friends sites as a moderator. There is most definitely such a thing as ANA negative lupus. You may wish to join our lupus community just to get more information about the blood tests and what the positives and negatives may mean. There are lots of knowledgeable members on the site who may be able to help you understand more about DM and lupus and how they may be related. http://www.lifewithlupus.org/
Thank you so much for the info.... anything helps. And I am sorry about your son having to go through this stuff. I will certainly check out your community site.. thank you so much for inviting me!
dancermom said:
My son was diagnosed with cutaneous lupus last year, chimeraskeep, so I spent some time on the lupus community. I do not have DM, but have volunteered on a number of Ben's Friends sites as a moderator. There is most definitely such a thing as ANA negative lupus. You may wish to join our lupus community just to get more information about the blood tests and what the positives and negatives may mean. There are lots of knowledgeable members on the site who may be able to help you understand more about DM and lupus and how they may be related. http://www.lifewithlupus.org/
Great! Thank you again!
dancermom said:
This resource may help, too: http://www.lupus.org/answers/entry/lupus-tests
Hi Chimeraskeep!
It was my amazing Dermatologist who first diagnosed my DM and then referred me to my Rheumatologist. My best recommendation (since you have had trouble with your regular Dr.'s) is to head to a great Dermatologist to see what they have to say. They may be able to do a tiny biopsy on a flared area, which is what they did for me and found the DM clear as day.
In the meantime, an over the counter cortisone cream may offer some relief to those areas.
Best of luck! Hang in there!
Hi Maren! Thank you for the advice. Just out of curiosity, do you know what kind of skin/cell abnormalities are found in DM rashes? I did have a biopsy done about ten years ago (purplish rash on both shins), and the doc at that time told me I had granuloma annulare.
I more recently saw a Derm at Tuft's in Boston. She thought my skin looked just fine and was nothing to be concerned about. What a moron... will NOT be seeing that idiot again!
Thanks again, Maren!
Hi Chimeraskeep!
A common issue with DM is something called Gottron's Papules.
MDA has a really great article with illustrations of inflammatory activity within the cells. Click here for the article.
Two biopsoes of active Gottron's Papules on my fingers is what initially diagnosed my DM. I blogged throughout my diagnosis if it's helpful for you. Click here for The Maren Update :-)
Hope this info helps!
M
