March 9, 2014 at 8:16 pm #677
This is not the rash and splitting skin that might be dermatomyositis. That rash is extremely painful and different.
These pics are just how my hands look sometimes. This is NOT a rash. Does anyone know if this is systemic mastocytosis? I do have all of the symptoms of systemic mastocytosis… I even have a sore liver and spleen. My hands do not always look like this. It comes and goes. Any ideas anyone? Could I have systemic mastocytosis AND dermatomyositis?
PS how am I supposed to get diagnosed with mast cells if the blood lab is only open until 4:30 PM and my symptoms are in the evening and during the night? I am supposed to get the blood work when I have my symptoms…Based on the blood work he has ordered, he is testing for mastocytosis.March 10, 2014 at 8:18 am #4925
I do have Raynaud’s, but this is something different. My hands are not hot or cold when this happens. It is just the look of my skin.
Here is a pic that I just took. Although my hand is not red, you can still tell that the skin is different. I can see a line at my wrist;not so obvious in pic. The skin is thick on the back of my hands and not like the rest of my EDS stretchy skin.March 12, 2014 at 8:10 pm #4926
MJ, I just wanted to suggest to you to take these sorts of pictures to your doctor. I encourage videos, too, for movement disorders that may come and go. Doctors often won’t ‘get it’, unless they see it (whatever ‘it’ may be)… Most of us don’t have mastocytosis, and I’ve never heard of it causing this presentations in the hands only… If it is mastocytosis, some lab work (especially a 24 hour urine) will usually pick it up. If it is mast cells getting activated, I would expect a different presentation. Sometimes we can tell what is going on by looking at concurrent symptoms. Does anything else happen when this happens? If I were you, I’d be tempted to ask your doctor (Dr. Google, in my case — ha) for differential diagnoses to polycythemia vera. I don’t think it is polycythemia vera, but perhaps one of the differential diagnoses? As far as having two conditions? Usually, we look for links — a reason that the two would be connected, right? I strongly believe that only after all of those have been exhausted do we start to consider two separate, unrelated conditions… When are you getting checked for dermatomyocitis, BTW? Gentle hugs…March 25, 2014 at 8:25 pm #4941
Hi Dr. Diana. Yes, other things do happen, but not every time. Once in a while my hands just look red, but most of the time I have severe symptoms that coincide with the red hands. I also do have red toes when this happens. Same sort of thing. My symptoms that usually accompany the red hands are: red toes, red hands and toes are hot, extremely distended veins over entire body, shortness of breath, usually POTS, headache, pressure and head, dizziness, sometimes nausea. Because the red hands were so prominent, I didn’t really notice anything else, but now that I am looking… it is mild, but it is there-my face and neck are a little bit red. Also, when all of these symptoms accompany the red hands, the red hands look more like a rash. However this is not the same rash that splits my skin open. that rash is different and painful. Also, the skin on the tops of my feet is tight and not stretchy, just like the skin on the back of my hands.
I will bring pics for my doctor and a list of testing I would like to have.
As for dermatomyositis, my doctors office really screwed up and it’s not the first time. I called the rheumatologist myself to find out why I haven’t heard from them yet. Two months ago they sent a letter to my doctor saying that he could not take the referral because he does not know anything about EDS. In this letter, he also suggested to my doctor to send me to a dermatologist and a Respirologist. So, I have waited two months to see a rheumatologist that I’m not going to see, and now my doctor doesn’t want me to see a rheumatologist she wants me to see a dermatologist because of the letter!
MJMarch 26, 2014 at 9:12 am #4942
I’m so sorry, MJ. With systemic symptoms, you need a doctor who is willing to work with your whole body (not just your skin). I’m going around and around with a few doctors like that now. It’s very frustrating. 🙁 I WILL tell you that I often don’t mention “EDS” or “hypermobility” for that very reason — they are scared/ uncertain. If 90% of us are never diagnosed, they likely seen a ton of us and never knew it… If the veins on your neck become distended, your doctor should know right away, though. Hang in! 😉March 26, 2014 at 9:28 am #4945
Thanks Dr. Diana. Yes, The veins on my neck are distended when I have these symptoms, but only if I bend over – then they are HUGE. Same with the blood pooling in my hands-if I lift my arm up the distention subsides. Yes, I am very frustrated. I think I should just forget about trying to get diagnosed and find my own way to get better… For instance, I did a five day deep tissue detox that involved eating raw meat, and that is when the splitting skin on my hands cleared up. If I know there’s something I can do to feel better, then maybe I should just do it and forget about getting diagnosed [as important as that is].
MJMarch 26, 2014 at 9:42 am #4947
MJ, If the veins in your neck are distending, that should alarm your doctors. It’s one thing to self-manage a condition when we know exactly what is going on — a different ball of wax if we’re just guessing. I’d strongly recommend that you keep pushing for a diagnosis and proper care. Please show them the distended veins on your neck. Usually a cardiologist will take interest in that! It is frustrating how many illnesses can exhibit through the skin, or other body part, but they are actually just manifestations of a systemic condition, and need to be treated as such. (I refused dermatological care because I knew it would cover up the systemic cause, for example). It’s just ‘easier’ for the doctors to treat what they see, rather than THINK ABOUT what it may indicate that they don’t see, but what is the root of the problem. Please keep advocating for yourself! 🙂March 26, 2014 at 9:51 am #4948
I will try, but I have shown my doctor and all of the specialists I have seen pictures of my distended neck vein (and lots of other pics). No one has done anything to help me. Oh, and I asked the neurosurgeon if that MRI pics could be a vein with two giant aneurysms [not sure if you remember this], he said it could be, but to ask a radiologist…I don’t see an option here to attach pics, or I would attack neck vein and MRI pic…April 10, 2014 at 4:00 pm #4974
I just went to a cardiologist today bc of a bad POTS flare-up since the weekend. My heart rate is in the 140s on standing from resting of about 60 to 70. I can only stand up for a few seconds because of the pots and Syncope. I can walk-it is very difficult, but much easier than just standing there.
I just wanted to let you know Dr. Diana that I showed my cardiologist the neck vein pictures today. She said it was because I was skinny. I could not be more annoyed. She also said she could not do anything to help me with the severe POTS flare-up. Just water and salt – as if…
But the good news is with this flareup, I had cardiopulmonary testing on Monday, and now I finally have concrete documentation that I do have dysautonomia and pots. Everything was recorded on ECG standing, sitting standing and sitting again. I did not have pots the day of my tilt table test, but this proves it – they will be sending the electrophysiologist a copy of the results. I couldn’t be more happy because no one believed me about the pots. So as annoyed as I am with the medical system, hang in there everyone! Two years ago I was not diagnosed with anything…since then I have been officially diagnosed with EDS, VVS, increased intrinsic heart rate, and now I will have the diagnosis of pots and dysautonomia once the specialist receives the report.
OH, APRIL 24 – RHEUMATOLOGIST-HOPEFULLY TESTING FOR DERMATOMYOSITIS AND SYSTEMIC SCLEROSIS!!!!! WILL POST IT ONCE I HAVE THE RESULTS…April 10, 2014 at 7:40 pm #4975BarbaraParticipant
But the good news is with this flareup, I had cardiopulmonary testing on Monday, and now I finally have concrete documentation that I do have dysautonomia and pots. Everything was recorded on ECG standing, sitting standing and sitting again.
Hey that’s great! Did they automatically do your ECG sitting and standing, or did you request it ?April 10, 2014 at 7:49 pm #4976
Hi Barbara. Yes, they automatically did it. They are a cardio rehab and have many POTS patients. I did mention it, but they were going to do it anyway!
MJApril 10, 2014 at 8:11 pm #4978BarbaraParticipant
Wow, that’s brilliant! It’s good to get part of the problem recognised isn’t it, if you know what you are dealing with, you can manage it better.
Yes, I wondered about a mild form of Systemic Sclerosis (Scleroderma) when I saw the skin on your knuckles. I’m glad they’re going to investigate it and hopefully ‘nip it in the bud’.
- You must be logged in to reply to this topic.