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barefut

Dermatologists

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The skin on my face is so tight I couldn't pull down my lower eyelid to get something out of my eye.

 

I get blemishes on my chin and around my mouth that are hard to treat and heal.

I exfoliate 3+ times/wk. I only lightly moisturize when I'm dry and I don't wear makeup.

 

Just wondering if anyone sees a dermy?

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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hi barefut ,

I have seen a dermy. The one I saw was a complete boob. My daughter works in a doctors office and says there are some that are very good and caring. The one I saw was interested in plastic surgury and collegen injections and botox. I think I will pass on the collegen thankyou. Kathy

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Barefut,

I am a cosmetologist...trained in hair, skin and nails. Exfoliating every other day does not give your cells a chance to repair, which can cause more skin irritation. Most people are good just exfoliating once, sometimes twice a week. That could be part of the problem with the rash. I am sorry you are having skin problems!

Jennifer

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Hello,

 

My daughter sees a great dermatologist every 3-4 months. I found him only after my insurance sent me to a couple of "botox injectors" first. He is one of only a handful of board certified pediatric dermatologists in the country, and he doesn't accept any insurance, but it is worth it. He has worked very closely with my daughter's rheumatologist, and I like getting feedback from him. I think my daughter's rheumatologist isn't as thrilled that she is "second guessed" by him, but he does have about 30 years of experience on her. He is also a teaching doctor at UCLA, which sees a lot of scleroderma patients. He has told me that he discusses my daughter at conferences with his colleagues in order to get her the best or most current information and treatment. It might be worth it for you to meet with a dermatologist just to see if he/she can help you. Good luck!

 

Jennifer

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Hi Kathygirl,

 

I've also found from the School of Hard Knocks that it is very important to know a doctor's background and interests before booking an appointment with them.

 

It's easy enough to ask for their bio when calling for an appointment. Heed all warning signs and do NOT assume that on top of their special interests they can also act like a normal doctor, particularly in areas like dermatology.

 

One of my dermatologists seemed very perplexed with my case but it wasn't until the fourth visit and second biopsy that she told me that she specialized in skin cancer and she'd never seen anything like this (skin tightening) in her life, and then referred me to another clinic. In the meantime, she'd had me going around in circles, saying I probably had eosinophilic fasciitis or morphea or panniculitis. She was very kind and helpful in other ways, but if I had only inquired about her background ahead of time, then I would have known this was not her forte.

 

Some doctors really get firmly in the headset that they are only their specialty AND their special interests, and tune out everything that doesn't fall into their narrow little slice of the world. And that includes us, the unwary patients who expect them to be a "real" doctor -- you know, like with knowledge of all sorts of illnesses and stuff, and not just waiting in line for a face lift or mole removal (dermatology) or a laser eye treatment (opthalmology).

 

Even some sleep clinics can be geared only towards sleep apnea, and tune out any other sleep disorders. Some (actually most) urologists only specialize in males and aren't even aware of the diseases (like interstitial cystitis) that primarily affect women. Some rheumatologists focus only on a certain disease, such as lupus or rheumatoid arthritis.

 

If you aren't aware of the doctor's background, but in the summary, they come in and say, good news, you don't need a facelift (say what, I wanted to know what's causing this skin tightness!), or laser correction would cost $2,000 (say what, I needed a prescription for dry eyes!), or good news, you don't have a single symptom of rheumatoid arthritis (say what, I was referred to you for scleroderma symptoms!)...then you know you've fallen victim to the only-my-special-interests doctor.

 

Also, some doctors may specialize in an illness you have, but may not "believe" in or offer all of the available treatments for it. So if you are interested in a specific treatment, make sure that is an option with that doctor or clinic.

 

After all, if we bark up the wrong tree, we can expect to have nuts fall on our head. And you can quote me on that! :o


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi,Barefut

The dermy I saw was in too big of hurry to read the questionaire I filled in. I saw this doctor about 5 times and each time I told him I had scleroderma.On my second last visit he did a skin biopsy because he thought I might have scleroderma. On my last visit he informed me that oh my you have scleroderma, medical science cannot help you, please dont come back. Like I said a boob. He also told me that he didn't want to give me any medication for itching because it would not be good for my liver but, if I needed some botox or collegen injections he is the man.

I know its unbelievable but true. I have learned through this if you feel the doctor is not listening try someone else.Thankfully here in Ontario for the most part Doctors are free but waiting lists are longunless you go to someone privately.

Ithink its a good idea to go to a dermy you never know what info they can pass along. Kathy

Oh and by the way if you need some botox I have just the man for you! haha

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Hi,Barefut

 

I see a Dermatologist every three to four months. I have been receiving PUVA treatments on my hands and feet for the past two to three years. I went twice a week at first, and now go once a week.

 

The PUVA treatments seem to have helped stop the puffiness and skin tightening, and then slowly improved them. It also seems to help with my Raynaud's.

 

The improvements were slow, but I noticed a difference within a few weeks of stopping treatments. I had to start again.

 

Best wishes,


Ron

 

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

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