Cutis Laxa?

I wish to share my full story, in hopes that a medical professional might read it, or someone who recognizes the symptoms.

In DEC 99, I felt a pulsating sensation beside my left shoulder blade. Doc kept sending me to specialist after specialist to no avail of diagnosis. Pain eventually spread to my entire upper back, neck, head and frontil rib cage, along with pain around the liver area. Ambulance after ambulance, doc after doc, test after test...........and no one could figure it out, but they all believed the pain was severe and real. To make a long story short, and likely desperate to find a cause of the pain, a doc reading about the 10th film of ultrasound, suddenly saw sludge in the gallbladder, and they told me I needed my gallbladder removed. Funny, but I'd never been even a pound obese, and the then husband told me it wasn't my gallbladder, and don't let them take it out. This was 2 years after the initial pain had set in. I was desperate and in severe pain, and permitted them to remove my gallbladder. The surgeon told me that as soon as I awoke from the surgery, all of the pain would be gone. When I awoke, all the pain was still there. My doc had died, and I found a new one. She sent me to a rheumatologist who did test after test. He said the only test not performed was an MRI of my spine. The lengthy sections involved first the lumber(negative), then the thoracic(negative), and finally the lumber. I wasn't in that MRI 1 minute, when they pulled me out and told me that they had found the source of my pain. They said I had 4 herniated cervical discs, a congenitally small spinal canal, arthritis, along with many other findings. Drug after drug, chiro after chiro, doc after doc could not lessen the pain. Finally, I was sent to the pain clinic at St. Micheals Hospital in Toronto. Here, they place anesthesia pads onto my back and neck to numb the nerves. It took about 2 years, but it finally got me mobile again. After several years of this, I was starting to enjoy life again, but had gained 60 lbs due to inactivity of the previous years. By eating healthy and going for a daily walk, I lost the weight very easily. I looked like my old self again.

In those years, I have had bouts of severe menstrual bleeding, along with months of having no period. My gyno did test after test(one was excruciating).....and stated that it was simply perimenopause. I once ended up at emergency because My stomach had bloated to the point where it looked like I was 7 months pregnant. Their tests revealed nothing but they gave me Naproxen, and by the next morning, the swelling(whatever it was)had subsided.

I have since had an emergency with a sodium depletion. Strange, but true......

About 2 years ago, I noticed my cheeks starting to sag, and then all of a sudden, I woke up one morning and could no longer hold up my eyelids without great effort. This was odd, because I was 48 years old and wrinkling upwards like Sarah Palin. All one could see was crows feet around my eyes, and I had no problem with them. As a matter of fact, people would comment that I was remarkably unwrinkled for a woman my age.

After going to my doc, who was on a mat leave for 2 years, she said that the face changes were because of weight loss. My sis and I found this hard to believe. I went to a clinic to try and remove the broken capillaries, but only the ones on my forehead, nose and chin would disperse. The procedure also whitened me to the point that you could now see broken capillaries that you could not see before all over both cheeks.

This past summer, a plastic surgeon reajusted the sagging eyelids, and also removed a basal cell carcinoma from my right nostril. The nose severely sagged and there was a lot of skin in the inner eyelids. He said that the nose would lift itself in 2 weeks as cartalidge always wins over skin. He also said the inner eyelid skin would absorb in 2 weeks. To this very day, this has not happened. My GP also told me to massage the nose to lift it. All this has done is worsened the scar.

Over the last few months, my forehead sags, my eyebrows have sagged onto my eyelids, leaving more excess skin in the inner eyelids. Also, the skin feels completely detached and looser than before. My left eyelid now sags so badly, that one can definately see a flap of hanging skin there. I also get pain in my right eyelid, below the eyebrow which is now hanging where my normal crease would have been.

The skin around my nose feels very mobile. My cheeks are now completely sagged to the point where there are folds of skin around my mouth, and around the lines of the mouth we all have. There are folds of skin around my jaw streaming into the neck. The folds are so drastic, that one can no longer tell where my face ends and neck starts. Also, all this sagging has revealed wrinkles that were previously tightly folded and not showing. It has revealed childhood scars that I haven't seen in decades. It has revealed acne scars that I haven't seen in decades. It has revealed scars and wrinkles which I never knew I had.

The loose and saggy skin now appears to be over my entire face, neck and the back of the neck. When I bend over, it's like my whole face and neck are being dragged down forward.

I look completely different than I did 2 years ago, and I now look like an 80 year old. I look older than my mother who is 80.


I have been on clonazepam, and various other drugs for coping. I am now seeing a pshycotherapist and awaiting a referral to a pshyciatrist.

The dermatologist, plastic surgeon and my doc all attribute this disaster to weight loss and smoking. I told her that they were all wrong. No 1....I didn't smoke that much until now. No 2....even when I quit smoking for 3 1/2 years, my skin was no different. It was clear and tight, as it had been since after puberty. Besides, I know many worst smokers than I, and there faces don't change the way mine recently has. I also told her that I've known many people who've lost more weight than I, and all there faces did was get a little thinner, that's all.

I've been to see her quite a bit, the last time, she noticed bruising under my eyes, and swelling below my bottom lip. She also saw more sagging. She finally stated that she could feel that the skin felt like it wasn't attached. She is now sending me to a connective tissue specialist. I think she now believes it when I said that the dermatologist, plastic surgeon and her, were all mistaken when they attributed the facial changes to smoking and weight loss. Especially, considering the fact, that I have many smokers in my family, one relative who has been a severe yo yo dieter her entire adult life, and the fact that we all age the same. We wrinkle upwards and tight, ending up with cheeks that look very high.....and we tend to look younger usually, than those who wrinkle downwards.


I've been searching the web for clues as to what might be wrong with me. The past few months produced fruitless results, as I could not find much that was confined to the face and neck. Yesterday, I hit upon CUTIS LAXA. Guess what? I have all 7 symptoms of the disease. Transient swelling, inelastic skin, skin folds, loose skin, sad expression due to folds in facial skin, bleeding under the skin, ruptured blood vessels...............I know it's not good to self-diagnose...................but I was wondering if anyone else out here has this disease? Or does anyone else know of diseases like this that are confined to the face and neck, or what else it could be?



This is a hard pill to swallow, as I wake up, look in the mirror, and see more and more of a monster face, every day.


Any input you might provide would be greatly appreciated.