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Dermatologist Visit


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#1 a_sharpe1

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Posted 22 April 2008 - 05:56 AM

Hi all. As you all know, I was diagnosed by deep punch biopsy as having morphea a short while ago. After talking with many of you regarding my options, I asked my primary doctor to refer me on to a specialist, which he did. I had an appt yesterday with a Dermatologist (from Vanderbuilt) cool.gif . I was left very frustrated and confused to say the least huh.gif . He spent 5-10 minutes tops in the room with me & told me he suspected that my diagnosis should be anetoderma rather than morphea. He then proceeded to, matter of factly, tell me that there are no treatments for either disease. He said I could try an immunosuppressant but claimed that it was extremely expensive, insurance companies, on average, do not cover it, and he was most positive that it wouldn't help. He also said he's never had a patient that listed pain as a symptom and couldn't understand what would cause it. Has anyone had a similar experience? Should I get a second opinion or hang it up and learn to deal with it - much as he suggested? Any comments would greatly be appreciated!


Love for All ~

Angie

#2 Guest_Sadie_*

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Posted 22 April 2008 - 06:12 AM

Angie, I am so sorry to hear about your appt yesterday. Yes, You should get a second opinion. I wish I could reach through
my computer screen and give you a {{{{{{Hug}}}}}}
Best of luck!
Sadie

#3 TJ903

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Posted 22 April 2008 - 07:07 AM

Sorry to hear about your frustration, this is the place for info no doubt. It is also a great tool for research so use it to gain as much ifo as you can for your doctors. I've alot of issues but have never been to anyone for my skin problems. My doctors. feel that it is more important to take care of my internal issues, that is why this site is great. At least the info. here is from actual experiences, and more focused.

I wish you non-stop, cushiony soft {{{{{{Hugs}}}}}}TJ

#4 kelowna52

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Posted 22 April 2008 - 08:49 AM

Hello Angie, I'm so sorry your having problems. I totally understand where your coming from. Eleven years ago, two differant Dermo's did the punch biopsies on me and both came back as Morphea. Ever since then I have had many changes happening to my body, but not to much on the outside. The morale of this story is I have been fighting with all of the doctor's I see here in Washington, because none of them here think that I have Scheroderma. I went through alot of testing at UCLA in California and the end conclusion was definately Scleroderma. So I understand, this desease is very tough to diagnose. I definately have Raynauds, my hands turn purple alot lately. I have alot of GI problems, and my hands and feet are very tough and hard. The biopsies were done on my feet, that's where it all started. I also have alot of body pain and bad migraines. I definately have figured out that you have to be patient, because the Doctor's treat the symptoms as they come and they don't want to give this desease a name so they say MCTD, Mixed Connective Tissue Desease. Well, good luck to you and I hope you find your answers. I would definately seek out another opinion.

Jackie S.

#5 Sweet

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Posted 22 April 2008 - 09:21 AM

Hi Angie,

I'm really sorry to hear about your very frustrating visit! I would be tempted to get a second, or even a third opinion.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Snowbird

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Posted 22 April 2008 - 12:40 PM

a sharpe1

I agree, I think you should get another opinion too....you have nothing to lose and everything to gain! Good luck!
Sending good wishes your way!

#7 beedee

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Posted 22 April 2008 - 01:28 PM

Hi Angie,
I encourage you to find another dermatologist, it's very important to find one who is on your side, and one that will not just assume this can't be treated. That is terrible that he told you that there was nothing that could be done!
I have morphea as well, what symptoms are you experiencing and what does the skin look like? I went for 5 months to my general practitioner did not know what was wrong with me and also insisted that I just deal with it, but I managed to get a referral to a dermatologist. When I went to the dermatologist, he looked at it and knew exactly what it was. He told me that it is likely that this will burn itself out in 5 years or so (no one can really know if this will happen or not), but he wants to speed that up and get it under control. He first started me on an immunosuppressant ointment, and then a steroid ointment, then a much stroonger steroid ointment, then UVB light therapy, and I just had steroid injections on Friday. Right now I am on the immunosuppressant and stronger steroid ointment, doing the light therapy, and now the injections. If these injections do not work, he will try a stronger dose, and if that doesn't work, I will have to go on methotrexate. I know that doesn't sound promising, considering all of the treatments I have been doing, but it is treatable, and I don't think that it is always this hard to get rid of. I have seen very little improvement, but I do think that the light therapy is preventing new spots.
The reason you should not leave this alone, is that morphea can spread, mine has spread from my breast to my hand and arm. I went from one spot to ten! I think morphea can be hard to treat, but I don't think it is impossible to treat. Please get a second opinion.
My dermatologist did say that he has found the steroid injections to be effective. They are painful, I had to get about 25 injections, but will be totally worth it if it works!
Good luck, and sending HUGS your way!
Danielle

#8 a_sharpe1

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Posted 22 April 2008 - 01:42 PM

Thanks Snowbird. You're right... What do I have to lose - besides time, money and sanity?!? LOL... :lol: :P
Love for All ~

Angie

#9 janey

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Posted 22 April 2008 - 04:24 PM

Angie,
I agree with the others - get a second opinion. Doesn't sound like this dermatologist spent enough time to even come close to a diagnosis. Danielle had some great personal experience to offer. I hope you get some help soon.

Big Hugs,
Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)

#10 a_sharpe1

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Posted 23 April 2008 - 02:22 AM

Danielle, thank you for your words of encouragement. :D Mine started out witha single lesion on my left butt cheek. I thought it was a bruise that wouldn't go away but noticed that it felt rough; kind of like an actinic keratosis (which I have also had). Being that I have a family history of skin cancer, I rushed in to the dr. By the time I saw the first dermatologist it had grown from roughly the size of a nickel to just over 22mm. Within a few weeks, the second one appeared on my left hip. I now have them on my arms, left breast, legs & across the lumbar spinal region. Don't get me wrong - some are much worse than others. My husband can't see all of them, but they're noticable to me & once they become more visible, they start getting larger & deeper. The ones I have seem to go down through the muscle, which I suppose is where the pain comes from. Before new areas appear they tend to bruise and the area around the indentation seems to become swollen & nodules can be felt. You are absolutely right, this dr didn't give me the "time of day". He didn't even look at all the spots. From the research I've done on "anetoderma", those spots are marked by loss of elasticity (spelling??) & wrinkling. Not one of my spots have loose skin or wrinkling, but they are marked by deep depressions where there has been obvious loss of tissue. At times, I assume when the disease is in an inflammatory stage, each spot is surrounded by a blue "bruise-like" area. He told me that in morphea, the areas are typically brown. He just made me feel like I had no idea what was going on with my body at all - very uneasy. The one thing I've heard over and over is "Oh, Vanderbuilt - they're the best...". I have another opinion... but maybe I'm the one who's wrong.
Love for All ~

Angie

#11 a_sharpe1

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Posted 23 April 2008 - 02:24 AM

Thank you Janey. I just don't know where to go for help. I suppose it's going to be a trial and error process, but I know I'll find help one way or another.
Love for All ~

Angie

#12 Shelley Ensz

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Posted 23 April 2008 - 05:27 AM

Hi Angie,

There are only a few dozen centers in the U.S. that specialize in scleroderma. They are listed at:
Scleroderma Specialists

Call the center(s) you are interested in and make sure they also handle morphea; some of them might be geared primarily or even exclusively to systemic scleroderma (and thus give you short shrift!). So please ask a lot of questions before you set an appointment.


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.

#13 beedee

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Posted 26 April 2008 - 06:01 AM

Angie,
I hope you will get to see a different dermatologist soon! This one was a complete waste of time for you, and We don't need any more stress than we already have. One thing that I know is not true, is his comment that morphea spots are brown. Mine are not brown, they look like faint purplish bruises. Some are almost impossible to see though.
My dermatologist never looked at my spots on my last visit, he realizes that sometimes they are hard to see, and I am the one who knows best about the progress or improvement. My new general practitioner however, does look at them. He isn't familiar with morphea and I am the first person he has seen with it, he just started his practice a couple of months ago. He is very interested in the morphea.
If you have any questions, feel free to PM me!
Danielle