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Honeycomb rash?
Posted: 09 December 2011 10:04 PM   [ Ignore ]  
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Recently I have noticed a honeycomb-patterned rash over my entire body, even my face, and especially after showering (not an allergic-type reaction). Maybe rash isn’t the correct description. It is under the skin, similar to mottling, but from the reading I’ve done about mottling, it isn’t. Anyone else?

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Posted: 12 December 2011 11:28 PM   [ Ignore ]   [ # 1 ]  
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KC - 09 December 2011 10:04 PM

Recently I have noticed a honeycomb-patterned rash over my entire body, even my face, and especially after showering (not an allergic-type reaction). Maybe rash isn’t the correct description. It is under the skin, similar to mottling, but from the reading I’ve done about mottling, it isn’t. Anyone else?

Can you google “livido reticularis” and look at the images there? Does it look like that?

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 13 December 2011 12:49 PM   [ Ignore ]   [ # 2 ]  
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Yes! This seems to be it. Although mine really does form a definite honeycomb pattern.  And possible EDS (my brother, who has classic EDS “flying bird” hands, also has this manifestation) or lupus (my ANA has always tested negative, but many symptoms of) are among the differentials.  We haven’t been dx’d w/EDS, but a cousin has. Since I have only known about EDS for about 2 months, I am still trying to sort through all of this. Thank you so much for your patience!

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Posted: 19 January 2012 02:01 AM   [ Ignore ]   [ # 3 ]  
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I have also noticed that the area around my mouth (“muzzle”)is cyanotic. I am not finding any information about it, except when it is associated with infant congenital heart disease, which, btw, my 3rd son has. I asked my pcp last time I saw her, but she didn’t have an answer. I think she is beginning to get overwhelmed with so many unusual symptoms. I am wondering if the cyanosis could possibly be ccsvi-related, and if I should be concerned. The livido reticularis has not subsided, both started at about the same time. I notice that with the motion of washing my hands or even putting on lotion or pumping my fist, the l.r. in my arms gets more pronounced. Maybe that’s normal, I don’t know. Thanks for any ideas.

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Posted: 19 January 2012 02:36 PM   [ Ignore ]   [ # 4 ]  
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Yup I have this. It is more pronounced after I get out of the tub or when I’m really cold. I have noticed that my almost 4 year old is displaying this on her legs and arms now too

I’m also cyanotic. Cyanotic scars on my legs are even noted in some of reports. I’m “fine” though (note the sarcasm) so apparently nobody is concerned. I also have low body temps and my skin surface temps are ridiculously low and cold,  even on my torso.

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It’s good to be open minded, but not so open minded that your brain falls out of your head.

“Patients can have as many diseases as they damn well please”.

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Posted: 19 January 2012 08:47 PM   [ Ignore ]   [ # 5 ]  
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I too have cold skin and even if I don’t feel cold, like right now my torso, legs, feet, hands and arms are all cold to touch, (oh and nose). My temp usually runs about 97. But then occasionally the tops of my thighs will get hot for a few minutes for no apparent reason. At my dr. appt. 2 weeks ago my temp was 100. Don’t know what that’s about and she didn’t either.
My bp is labile and I do, at times, have +30 pulse when I go from lying down to standing up, usually after 5 minutes. But not all the time, usually in the morning.
I am at the beginning of trying to figure all of this out, (my only “official” dx is fibromyalgia and depression) but I have never been convinced that that is all that’s going on. It seems like it must, at least, be dysautonomia, too. I would really like to know what kind of dr. would dx it and also EDS. My pcp is thinking along those lines (EDS), especially after I tore the skin under my eye when I wiped water away in the shower, but she thinks that even if we knew for sure, there isn’t any treatment for it anyway. And then add in ccsvi symptoms, the dialogue with her gets more complicated. My insurance requires referrals, which she is pretty willing to do. So I am in need of some direction, if anyone has any input it would be much appreciated! Thank you!

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Posted: 19 January 2012 09:12 PM   [ Ignore ]   [ # 6 ]  
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KC, usually a cardiogist will diagnose POTS. They won’t always have to put you through a full tilt table test at a stress lab although many of us do have TTT (tilt table tests) done. Mine showed neurocardiogenic syncope and POTS.

As for your doctors attitude towards an EDS diagnosis… seems even she is confused. On one hand she sees no value because there is no treatment yet she notes you tore your eyelid wiping your eye. What’s going to happen if a surgeon ever tries to stitch you up?  Or even a dentist?  Sure, there’s no “cure” but there are SO many ways to manage EDS’s effects. It also helps to explain so many things and to put your body in to context for other physicians and medical personnel. You can say I have fragile skin till you are blue in the face. They hear “blah blah blah”. If you say “connective tissue disorder EHLERS Danlos Syndrome type _____” you have a better chance of having your symptoms, concerns, PAIN, etc taken seriously.  For a condition that there is nothing to be done about the EDNF manages to pack the lecture schedule FULL for days with experts offering just that; practices and suggestions on how to best manage all the various manifestations of the disorder. The whole “there is nothing to be done” attitude is a holdover from the “benign joint hypermobility” days. There are still WAY too many docs in that camp. Many because they have never been taught or shown otherwise.  There absolutely is knowledge in diagnosis and there is plenty to be done to manage EDS.

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It’s good to be open minded, but not so open minded that your brain falls out of your head.

“Patients can have as many diseases as they damn well please”.

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Posted: 20 January 2012 12:04 AM   [ Ignore ]   [ # 7 ]  
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I can’t thank you enough for your input, PalominoMorgan! That is exactly what I have needed. And that has been the problem when seeing other docs, like when I saw my new ophthalmologist and neurologist. Without having a confirmed dx, they give you the “look” if you suggest the possibility of something such as EDS. She has mentioned sending me to a rheumatologist. I’m thinking if I can get EDS dx’d, I would be in a better position to suggest a cardiologist for possible dysautonomia.
So, then, one more question, if you don’t mind, what doc would dx EDS, or would it be my pcp? Thank you again so much

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Posted: 20 January 2012 09:30 AM   [ Ignore ]   [ # 8 ]  
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KC - 20 January 2012 12:04 AM

I can’t thank you enough for your input, PalominoMorgan! That is exactly what I have needed. And that has been the problem when seeing other docs, like when I saw my new ophthalmologist and neurologist. Without having a confirmed dx, they give you the “look” if you suggest the possibility of something such as EDS. She has mentioned sending me to a rheumatologist. I’m thinking if I can get EDS dx’d, I would be in a better position to suggest a cardiologist for possible dysautonomia.
So, then, one more question, if you don’t mind, what doc would dx EDS, or would it be my pcp? Thank you again so much

Oh yes.  The look. You are with sympathetic docs if all you are getting is the look. When you get the arrogant ones or they get tired of you they flat out tell you “not to get so worked about these things”, “you seem VERY aware of your body”,  and the one that drives DrD and I absolutely nuts… “you’re fine.”. I hate that one so much I have a t-shirt design I just need to put to paper. Proceeds to benefit my service dog fund since I’m so “fine”. DrD refers to those lovely physicians as Doc-Tards.  You will learn to be a professional patient. Ou are the captain of you medical team. If somebody doesn’t want to be on the team, fire em. Doesn’t matter how big a hot shot they are. If they aren’t working for you, they re working against you.

Now, as for an EDS diagnosis. It can come from any doctor really in theory but to be definitive you will want it to come from an EDS knowledgable geneticist. There are recommended doctors scattered around the country. If you are willing to tell me what state or part of the country you are in I could make some suggestions.  If you can afford a plane ticket your best bet is traveling to Baltimore to see Dr Clair Francomano.  She is THE EDS expert in our country and sees patients of all ages.  In all my time and research I have never heard a single bad word about her. Extraordinary really. I nave seen her myself too and love her.  Of course if travel is not an option there are other very good EDS docs around the country too. Knowing where you are or where you could get to would help in making suggestions.

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It’s good to be open minded, but not so open minded that your brain falls out of your head.

“Patients can have as many diseases as they damn well please”.

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Posted: 24 January 2012 02:11 AM   [ Ignore ]   [ # 9 ]  
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You are funny!
Well, I saw my pcp Friday… She was at a loss for the things I asked about, like telling her straight up that I want to pursue an EDS dx. One problem is that there only 2 or 3 geneticists in this area, eastern Washington state. I brought up all the symptoms I have that I think are dysautonomia related. That fell very flat. Oh, but she DID ask if I’ve ever had counseling… (b/c people with a lot of health problems get depressed and counseling can help) Before I left she had the nurse come in and check my bp when lying down, sitting up and standing up. I asked her to check my pulse, as well. She did each at 1 minute intervals. I brought up that my pulse goes up after 5 minutes, but by that time I knew I was done there. The labs she had drawn all came back normal.  So, I guess I’m “fine”, too!
I would be interested if you know of any in docs in the northwest. I don’t have a lot of confidence that my insurance would cover a doc in another area, but it’s worth a try. But then I would still need her to refer. =[ Thank you!

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Posted: 24 January 2012 02:44 AM   [ Ignore ]   [ # 10 ]  
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From the EDNF site here are some geneticists at U of W. I know they have some research going on now too.


Peter Byers and Melanie Pepin
Research/Genetics
University of Washington
Department of Pathology
Box 357470
Seattle
WA
98195 USA

Phone: 206-543-4206
Fax: 206-616-1899
 

 

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It’s good to be open minded, but not so open minded that your brain falls out of your head.

“Patients can have as many diseases as they damn well please”.

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