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#25432 - 11/12/09 09:11 AM Diagnosing CIE - Do Other Have These Symptoms?
livinonaprayer Offline
Member

Registered: 11/05/09
Posts: 33
Loc: Indiana
Hello,
I am glad to have found this website. I have also visited the FIRST website and found helpful info. I am having trouble determining if I have CIE or Vulgaris and wondered if any of you with CIE have similar symptoms that I have. I always thought I had IV, but some of the others on the IV forum thought the heat intolerance suggested a different form.

I have all the IV symptoms except for nasal allergies, asthma or eczema in >50%. During annual 2-week winter vacations to Florida when I was a child, my skin always improved.

In addition to IV symptoms, I also have the CIE symptoms of the thickening of palms and soles (but not flexures). I also have the heat intolerance and my hands on both sides (top and bottom) look the pictures of the hands under CIE.

When I exercise, there is no sweat but the area above my upper lip gets moist and so does my chest. I could not see any visible wetness just slightly tacky to the touch in those areas. My face gets very red. It is only red during exercise, heat, or when I am embarrassed.

The only time I have any visible sweat or wetness on my face is when I am outside in hot, humid weather in the sun even if I am doing nothing other than sitting and getting no exercise. Sometimes it looks like I have a “white moustache” with my very red face. If I am very nervous or upset, the area above my upper lip may sometimes sweat but that is rare.

I was not a collodion baby. My mom said I was red like a lobster, but she did not say anything about a membrane. I am a fraternal twin and was born 6 weeks premature, and had to stay in an incubator for a month before I came home, but I assume she would have remembered if I had a membrane. I asked her if my skin was dry at birth and she said she thought it was not at birth but sometime later. I know for sure it was by kindergarten because no other kids would touch my hands. They said they felt weird and looked old. The skin on my hands and feet has trouble absorbing and holding the moisture. The skin on the rest of my body will feel better after lotions or creams, but on my hands and feet it doesn't last more than a minute or so.

Scale is on most of body except face, neck and inside of arms and wrists and front of ankle and top of feet, but toes and fingers are wrinkled. Face is flaky. I usually leave behind flakes on my cloths which gets better the more consistent I am with AmLactin. Worst on back and legs. Scales and flakes are white, thin but very visible.

I am the only one in my family with this. I have two sisters and two brothers who are not affected. My parents and grandparents were not affected and I don't know of any distant relatives. My two sons have skin that gets a bit dry in the winter and they have some dry bumps on the back of their arms and legs (KP) but that is it. I have not seen any scales or flakiness on them. They both sweat. One sweats very easily and the other sweats and gets only a little red in the face. It doesn't seem to be a problem for them though. My one son's hands are a bit more lined on the palms but they are very fine lines and his hands are not dry and the tops of his hands look normal and don't have the "old look" like mine.

My skin tolerates most products and is not easily irritated except for dryness and when it gets fissures or splits on my knuckles, fingertips or heels in the winter.
One thing I don’t understand about the lack of sweating is if scale prevents sweating, why wouldn’t I sweat in place that don’t have scale such as underarms, neck, etc.? Do you think the sweating is part of ichthyosis but not scale related? I don’t even sweat in the summer when my skin is better.

About the red face, I found this on the web:
"Red skin indicates vasodilation and the pooling of blood near the surface for release of heat. The red flush is just a sign that you're building up heat. When your temperature begins to rise, your body dilates the blood vessels in your skin to reduce your body temperature. This circulates blood to your skin's surface so that heat can radiate off of it. Your face turns bright red because warm, oxygenated blood rushes to it as a way to help prevent you from overheating."
Thanks for your help! Just wondering if others with CIE have what I have. I don’t know if I have a mild case of CIE or a severe case of IV and if they can be combined like this.

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#25442 - 11/13/09 06:30 PM Re: Diagnosing CIE - Do Other Have These Symptoms? [Re: livinonaprayer]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
I assure you that you do not have severe IV. That is because I know with 100% certainty that I have severe IV, and my symptoms and heat intolerance are different than yours in the following manner:

People with mild IV, the vast majority of all ich cases in the world, have absolutely no problem sweating. I have family members like that. In the most severe cases of IV, like I have, my cosmetic appearance is hostage to the climate and weather I live in. The difference between good and bad is night and day and correlated precisely with the changes in the weather. To be exact, it is more than correlation, it is cause and effect. The weather is a deterministic variable of cosmetic appearance and physical comfort or discomfit.

Hence, in the summer or in tropical weather where it is always summer, I am virtually free of scales. AND I COULD SWEAT PROFUSELY ALMOST EVERYWHERE ON THE BODY. And the constant sweating, in turn, exfoliate more scales, like in a virtuous cycle. As the weather gets progressively cooler due to seasonal changes, even relatively mild seasonal changes, the scales get progressively worse and begin to pop up everywhere, with some parts of the body more aggravated than other parts. Sweating becomes difficult. But the discomfit is never one of heat stroke or fainting. It is a real nasty "prickly itch" that comes on when I need to sweat but have trouble doing so, but will cease when sweating begins. As summer comes around, the heat and humidity would facilitate sweating and exfoliation. Prickly itch becomes less and less of a concern.

If what I have described is alien to your experience, then I assure you that you do not have IV or severe IV, but probably one of the rarer forms of ich.

Good luck to you.

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#25457 - 11/15/09 07:04 PM Re: Diagnosing CIE - Do Other Have These Symptoms? [Re: Promiseland]
Airforce Josh Offline
Member

Registered: 11/05/09
Posts: 29
Loc: Maryland
Promiseland,

Are wrinkly fingers with IV a nomral symptom that goes hand in hand with linear palms? I have the wrinkly fingers and i noticed the IV discription doesn't talk about wrinkly fingers.

Is it possible to have a mixture of the Ich diseases?

Josh

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#25493 - 11/18/09 04:19 PM Re: Diagnosing CIE - Do Other Have These Symptoms? [Re: Airforce Josh]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Wrinkly fingers is an IV symptom only for the more severe cases.

The mildest cases only have faint lines of mosaic shins that are barely noticeable.

Mild cases have mosaic shins and maybe seasonal scales on very limited parts of the body, and maybe rough palms. No heat intolerance and no prickly itch. Usually, skin problem not severe enough to bother with this website. Once in a while, someone shows up to ask about how to get rid of mosaic shins.

Severe cases are defined by existence of prickly itch.

I have never understood about concerns for wrinkly hands raised on the forum. It is a cosmetic issue that usually afflict people whose ich present more serious cosmetic issues as well as sweat disorder issues.

If each of your parent carries different type of ich in his or her genes, I suppose your genetic inheritance would be seriously problematic. But I am not one on this board who has studied the intricacies of genetic inheritance within each type, much less any ramifications of cross over. Others can answer this question.




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#25498 - 11/19/09 10:47 AM Re: Diagnosing CIE - Do Other Have These Symptoms? [Re: Promiseland]
Airforce Josh Offline
Member

Registered: 11/05/09
Posts: 29
Loc: Maryland
Promisland,

I have now came to the conclusion that i have Severe IV...

Wrinkly Fingers
Prickly Itch
Pillaris on my upper legs and upper arms
Bad white flakes in winter..

It just wasnt a big deal growing up b/c i was in south florida, it took this god awful northern winter for me to realize that i have this problem and i have a severe version..

Atleast i know why i get prickly itch now, and i don't have to try to figure it out online or just wonder why this is happening to me, it helps me get over it...

Josh

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#26548 - 06/24/10 01:09 AM Re: Diagnosing CIE - Do Other Have These Symptoms? [Re: Airforce Josh]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
when I was born, the doctors thought I was allergic to milk before I was diagnosed with Ich. As far as I know, no collodion. My hands ahve always looked like that of an 80 year old. I have the scales and then what looks like alligator skin on the inside of my elbows, back of knees on tops of ankle. The flakes are thin and white but I have calluses on my toes, balls of my feet and heels and can peel them off in very big sections. On my hands I have calluses at the joints. My face sweats, not so much anymore. Been getting pimples from lack of sweat actually. My plams get moist and a few other areas of my body get moist but not actually sweat. I have a very low tolerance to heat and feel faint in high temps with little to no activity.
_________________________
26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26550 - 06/24/10 10:00 PM Re: Diagnosing CIE - Do Other Have These Symptoms? [Re: Adrienne1]
Allie Offline
Member

Registered: 03/19/10
Posts: 18
livinonaprayer,

I am in the same boat as you are!! However I have never been diagnosed with ich so far, but I share all the same symptomes. I NEVER sweat, only a little bit when I get hot, and even then it's only on my chest. I do get red in the face also. My hands also look like their 80 year old hands, which I'm reminded of all the time!!
No one in my family has ever even heard of ich, and no one if affected I have 3 siblings and all of them are unaffected.


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#26827 - 08/31/10 10:30 AM Re: Diagnosing CIE - Do Other Have These Symptoms? [Re: Allie]
livinonaprayer Offline
Member

Registered: 11/05/09
Posts: 33
Loc: Indiana
Sounds like we do have the same type - whichever type that is. I doesn't fit neatly into Vulgaris or CIE. The derm I went to just called it Ichthyosis and gave me a prescription for LacHydrin. I don't think he considered it any big deal. I would say that is because, except for the lack of sweating, it is mostly cosmetic and I can manage it fairly well with daily use of Dermal Therapy lotion. Although nothing helps my hands and feet. I am also reminded of it when the occasional rude person shakes my hand and makes a comment or just looks at my hands. I am 45 now and decided I just don't care anymore what they think. I used to be aloof and avoid shaking hands, but decided it was better to be friendly and not worry!

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