overwhelmed

this is my 3rd post and i have been reading about a lot of different skin disorders. i don't really know what applies to me. i have LINEAR MORPHEA can somebody please explain this to me! my dr didn't seem to know to much please help

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Hi, and welcome! My first suggestion is to find a doctor that IS familiar with scleroderma; a rheumatologist or sclero specialist (I'm assuming you were seeing a dermatologist or GP). You've come to the right place to get answers, but at times this site is a little overwhelming because of the different types and severities of scleroderma. It can get a bit scary! You are going to hear a lot about organ involvement, but if your diagnosis is correct and doesn't change, you don't need to worry because morphea does not involve the organs. Now, I'm just curious if it's "linear morphea" or localized morphea? Usually localized is categorized as EITHER linear or morphea, but I suppose it could be both. To be more specific on what it all means...localized (morphea or linear) involves the skin. Morphea shows as patches on the skin and linear looks like streaks of hard skin. For the most part, this version of sclero is usually just a nuisance. It can spread to the joints and muscles, but not the organs. On the other hand is systemic scleroderma. This is the one I think you'll read the most about on here because it is more serious, affecting skin, muscles, joints, lungs, heart, kidneys, etc.
I would also recommend scleroderma.org to you to do some more reading and research. Hopefully someone with morphea can fill you in on some more details I am not familiar with.

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Hi there - please use our resources and start educating yourself about scleroderma! http://www.scleroderma.org/pdf/Medical_Brochures/Localized.pdf

If your doctor does not know a lot about it, you need a rheumatologist that does!! Please visit this site and I'm sure you'll find someone that will help you to deal with your disease. http://www.scleroderma.org/medical/centers_ca.shtm

The earlier you can intervene, the better you will manage. Just keep track in a journal of what you've done, who you've visited and keep copies of your lab work. We are here for you! mb

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My daughter has linear morphea and we can visually see and we can feel most I guess. My daughters is affected from her left tips of her finger tips all the way up her arm and she has it on her upper back too the morphea

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ljenks:
To further compound the discussion, mine was labeled by my dermatologist as "generalized Morphea" which is a distinction I have not seen on this site as of yet - so many posts to yet read, not enough time in the day :-) My symptoms are not as broad as some. ALL of my skin is affected - from the breasts to the ankles in the front, and from the back of my neck to my heels in the back and all through the buttocks :-( The itching is SEVERE and the skin very tight. Nothing alleviates the itching - benedryl helps but I wake up a bit depressed from sleeping so hard. I use Dr. Bronner's eucalyptus oil liquid soap - which provides a cooling effect and then use CVS brand of Serna which also has a cooling sensation after putting it all over. My abs and armpits are so tight and so itchy it's hard to believe i can still get to the gym. I have started my juicing regime today... stay tuned.

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I was also diagnosed with generalized morphea...very severe...entire body except for my face and hands have been affected. The dermatologist that performed my skin biopsy prescribed Vectical...$500 for a 2 week supply...did not even touch it. The rheumatologist started me on Methotrexate in March (by the way, she said don't even bother with the creams,they aren't effective)... developed open lesions at biopsy site on abdomen and when I say that, I mean my entire abdomen is like one huge cold sore....treated by wound care center with no success, so went off the metho to give my immune system a chance to work...this has been going on since February of this year..it has just recently started to heal. What a mess....I also have GERD, Vitamin D & B12 deficiency, extreme fatigue,swollen legs, ankles and abdomen...still undergoing testing...mine came on very suddenly, all within a 3 month time period. I have always been super healthy, this has been such a blow to me. My whole family has been afflicted with some form of auto-immune disease. My mother had a liver transplant 5 years ago...auto immune billiary duct disease and RA... eldest sister with RA, 2 younger sisters, one with lichen sclerosis and the other with vitiligo. It was just a matter of time before mine showed up, I guess. I worry that the docs may not distinguish this from diffuse scleroderma or systemic...not sure how they know for sure. In my opinion, I don't think they know until another symptom appears. Like my rheumatologist said, "the only thing we can do is treat the symptoms". I can't believe this is happening. Very depressed.

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To bgood:
I was raised in Rochester, NY! Is it possible with all the autoimmune things in your family that you were raised near a chemical plant? We were not that close to the Love Canal, right? (I now live in southern, CA for the past 21 years). We are close in age too, seems we have a lot in common. I am so sorry to hear of your sudden onset and how much damage it did so quickly. Maybe it's us healthy ones that these diseases attack first. Go figure. I went and saw yet another doctor today - an allergist. He thought it prudent to run an allergy panel since it's been since 1989 that I last had one. (I used to have hayfever as a child and young adult). Just to see what shows up as positive for allergy so I can stay away from aggravating my immune system further. He also prescribed a creme that he said he felt certain would help the itching - a steroid - starts with a "T" - triasalone or something like that - I didn't see the rx as I gave it to the nurse to fax to my mail order pharmacy. And yes my biopsy site is very sore and irritated - yet to heal since March. I also had the Vitamin D deficiency caught by my endocrinologist a couple years ago during my yearly thyroid work up - I have Hashimoto's type of hypothyroid too, and life-long eczema on and off (been in remission for years now) which are all auto-immune things. So much for being healthy, right? But at least those are treatable ailments. This sclero is quite another animal. Now i have insomnia too. I just can't get to sleep from the itching and then I become sensitized to the idea of even going to bed. That does NOT help! The juicing gave me a headache for most of the night tonight - I guess I am detoxing. I didn't even want the 1/2 of hamburger I was sharing with my hubby at our favorite steak joint tonight. Had a few bites and a few fries and I just wasn't interested. I DO hope the juicing and the supplements keep it from progressing. It's been one year now since the symptoms began. I would LOVE to hear what kind of treatment your sister is getting for the Lichens sclerosis which is my diagosis along with the scleroderma. Only mine is not genital - the REST of my body however, another story. You should do some research into the Elmira area to see if there are any hidden chemical dumps - upstate NY is notorious for that kind of stuff. We had Kodak, Xerox, Bausch/Lomb and all those chemical producing factories. I would bet most of my money on that cause, given the family history of autoimmune illness. Now, how to protect yourself and what to do about it. Please try the juicing - I hear it's about the only thing that works. Keep me posted!

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To fulloflight
Oh my gosh, I can't believe you lived in Rochester, it's a small world. My rheumatologist is at the University of Rochester and I travel there for now but I found a very good one here in Elmira who has a few sclero & lupus patients. I have more faith in him than I do the one at the U of R, she basically said to me, this is what you have and I'll see you in 3 months. My sister with Lichen Sclerosis has not found anything that relieves her symptoms..she has the genital type. She's had it for 20+ years and none of the Doctors here know how to treat it, or ignore it. She found an oil on line called "Emu Oil", she has had some success with it (just relieves the symptoms though). Considering you have it on a large part of your body, I doubt it's anything that you'd want to use. It's very, very expensive for a little tiny bottle, I'm thinking 2 oz's. You mentioned you have thyroid involvement..I do as well. I never had this until I was diagnosed with this. Are you at all concerned that it may be more than generalized morphea? Why do we have other involvement if morphea is supposed to only affect the skin? The rheumatologist told me that I would have Reynauds if it was diffuse sclero or systemic..but I have read that some people develop Reynauds after a diagnosis...any thoughts on this?

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Bgood:
Yes, it is an overwhelming road we are on with this totally weird disease!! I am NO expert by any means. I have only recently begun to spend considerable amounts of time on this forum to learn about it. Right now my legs feel like there are fleas jumping on them - that is always present in my symptoms. My house doesn't have fleas. I still think that the proximity of the Love Canal in Buffalo had a LOT to do with the cancer rates and auto-immune issues in upstate NY. On the small street I grew up on (in East Irondequoit) there were at least 5 cases of cancer and ALL of them were approx. 10 yards away from each other!!! My mom is one of them. How's that for STRANGE coincidence....Re: the Lichens Sclerosis: my biopsy showed that AND scleroderma. I was already upset by that diagnosis when the Sclero diagnosis came in a few days later. Aside from the short trial of Doxycycline, I have done NO meds or intervention except for the UVA-1 light therapy (and I dread getting melanoma from using it). The UVA-1 light is shown to be useful in treating morphea scleroderma and I guess lichens too(not sure?). My insurance has covered me a machine for home use. My mom is still in Rochester and she goes for light/laser treatments for her psoriasis, so I know there is a machine in Rochester. They are VERY expensive for the doctors to buy but you need to look into it. It has helped some but I can only get down to the machine (it's an hour away) once per week and now waiting for my own to be delivered. I am very familiar with Emu oil. Almost nothing helps with the itch except for Serna lotion (I use the CVS brand, the one with the menthol in it) and benedryl at night. It is MUCH worse at night after taking off all my clothes. So the only real commitment I have made is the juicing and I just started on Friday. We shall see if that works for me. My hashimoto's was diagnosed 10 years ago and was easily treatable with natural thyroid meds (my doctor prescribed Armour for me). I also had some severe bouts of dry-eye too over the years and was very worried about Sjogrens. The dry eye seemed to resolve and I had tear duct plugs put in. I do pay pretty good attention to my diet and have been going to the gym 5 days a week for the last 24 years or so. But now...all my healthy living has ended up in this newest disease. AND my husband is in stage 4 colon cancer. My friends and family tell me it's 'stress related'... I just don't buy it. I think it is just a weird coincidence myself - a fluke and God's sense of humor.... Celiac runs in my family too and I am awaiting my blood result on that panel. I am only at the beginning stages of this journey though the symptoms began last June 2011 which I largely ignored, as I was dealing with my husband's diagnosis and 2 major colon surgeries back to back. I thank God for my family and friends and I just pray it doesn't get worse. Keep reading the forum and pay attention to the lab that does that special testing for Lyme disease. Also common in Upstate, NY. Gotta love NY! I will be there next week. Looking forward to it.

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Interesting. The whole thing about location and disease clusters. I was raised in Southern Arizona and the rate for lupus, childhood leukemia, and a bunch of strange autoimmune diseases is enormous. We lived with smelters from copper mines and acid rain that melted fence posts. Can't help but wonder. Now I live in Northern Arizona where there are pay outs and clinics for Down Winders who got in the way of radiation when they tested bombs out here in the 50s and early 60s. Not even counting the Navajo tribe and the problems they have from uranium mining. What a mess! But it is worth taking time to look at these events. There is a Disease Cluster foundation. I should get the info from my friend in Tucson. Anyone want it?

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Nutridog: I would be curious too about the disease cluster foundation! Helpful and might shed some light on why this kind of thing happens in certain places more than others. I wonder if the Scleroderma foundation has done any research on the locations of people with the disease.

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Here is an article about disease clusters:

http://switchboard.nrdc.org/blogs/gsolomon/health_alert_disease_clusters.ht ml

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I am actually going to be doing the layout for the annual report of the disease cluster foundation... so I will have more info very soon.

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I do wonder though, even if we are at optimal levels of health and our immune system and endocrine systems are tuned to perfection, could any of us humans ward off any of these things given the dangers of chemicals we breath in each day or are exposed to through our skin, air and water? Is it even possible to think we could? So depressing! We spend years taking care of ourselves and we cannot fight off every dangerous thing that living in the world does to our bodies. Sad. Seeing the facts on clusters should be very enlightening.

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I have linear morphea as well. It's been in remission since 1998. What ljenks mentioned about being prepared to hear a lot about it spreading to your organs is true. It may be that the consensus has changed now but I was told this constantly by the worlds leading experts. That said, I have to admit it seems completely false in my experience. I never had any problems with my organs due to scleroderma. However I do have some problems with my joints that probably resulted from it.

The first thing I would suggest is finding a dermatologist who is familiar with the disease. Depending on where you live, this may take a bit of searching.. The second thing I would suggest is asking about PUVA light therapy. Again times may have changed but I will warn you that after a few sessions of this treatment my insurance decided to cut this. I was fortunate enough to have a doctor that was willing to provide the treatment regardless of if it was covered, free of cost.. Though I know most people are not going to be that lucky. I truly believe it was the only effective form of treatment and part of why I am in remission today.

Other forms of treatment that I can recall having were Plaquenil, which did not seem to have any real effect on me. And the first attempt at treatment was 1000 milligrams of Amoxicillin a day which ultimately just made me immune to that spectrum of antibiotics.. I would advise against Amoxicillin for this reason.

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dovonex cream was a good treatment for my linear morphea

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Very interesting.....the town I grew up in is currently under investagation for too much disease/cancer. For many years we had a chemical plant and paper mill located close to the waterways. They are since closed down. Actually Dynachem was charged 20 years ago for polluting our water system and was sued by the city in which they paid to have a reverse osmosis water system installed for the city.

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