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Localized Scleroderma questions


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#1 Loyhargil

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Posted 26 September 2008 - 05:00 AM

I have a couple of questions about localized scleroderma, if no one minds.

First, is it possible for it to periodically re-activate? I initially started showing symptoms at age 7 (although I wasn't diagnosed until 19). I'm 36 now, and it appears to be growing again. Can pregnancy cause it to reactivate?

Second, I've seen some conflicting research, some people say localized scleroderma never shares the far-reaching symptoms of the other forms, some say there is some crossover. Can localized scleroderma have some similar symptoms to diffuse or systemic (such as fatigue, dizziness, IBS, etc.)?

Which leads me to third, I've read that periodically, other forms of scleroderma can be initially misdiagnosed as localized scleroderma. Is this possible if the diagnosis was made via biopsy? The dermatologist who made the diagnosis didn't do any other tests aside from the biopsy at the time that I can remember (although that was 17 years ago, so maybe I forgot).

To kind of put things in context, here's a brief rundown of my history.

At seven I began developing a brown patch on my right abdomen around a chicken pox scar. Initially Mom thought it was ringworm, but it didn't go away with treatment, and other spots began appearing - one more on my trunk, two on my arm. Mom took me to the local small-town doctor who said it was a fungus, and told me to rub jock itch medication on it. This essentially went on for the next 12 years, and I didn't give it much thought. Except that I hated doctors for making me use jock itch medication, and that I hated changing in the school locker room because inevitably, someone would ask, "What on earth is THAT? Ew!!!!"

At 19, I noticed one spot on my arm and one on my stomach were increasing in size. This time, my new college town general practitioner referred me to a dermatologist. The dermatologist looked at it and immediately said she suspected it was localized scleroderma - linear and morphea both - and did a biopsy of one of the spots on my arm to confirm the diagnosis. She told me it would burn itself out in no more than five years, which I found odd since I'd already had it for 12. But she didn't seem concerned, so neither did I, and I just went on.

Now, I'm older and wiser and have been researching it on my own more. I'm getting ready to see another general practitioner (so I can get a rheumatologist referral). I gave birth to my second child in February, and since then I've noticed three more spots on my abdomen, and I've noticed that the two separate spots on my arm have merged into one giant line, and have begun growing further up my arm toward my armpit. In addition, there's a new small spot near the line on my arm that is the same color as the others, but only about the size of a pencil eraser, raised, jagged, and hard to the touch.

Has anyone had any kind of experience with this? Since my son was born, I've also been suffering from extreme fatigue - and not because of him, the little doll's been sleeping solid through the night since three months old. But it's basically all I can do to get through the work week, and I've struggled to stay awake at my desk. Embarrassingly, I fell asleep while on a conference call with my paralegal, who thankfully wrote it off to my being a new mom and didn't fuss about it. By the time Friday rolls around, regardless of how much sleep I've gotten during the week, I end up sleeping a full 12 hours Friday night, and nap at least three hours the next day. Then I sleep another 12 hours, generally do okay Sunday (although I may still nap for up to an hour), then start the week over.

I've also noticed I'm bruising easier than ever, my TMJ has flared up, I'm constantly freezing cold, I'm wearing socks to bed in the summer, I'm nearly always nauseous and/or dizzy from the time I wake up until mid-afternoon, my fingers hurt a lot and periodically swell, my always-sensitive skin has reached new incredible levels of dryness and sensitivity, and my hair is starting to fall out (which admittedly could still be the result of post-pregnancy hormones). Since some of these can be cross-over symptoms to autoimmune diseases, I'm getting a little worried.

Hopefully the doctor will work with me well when I see him in two weeks. But I figured I'd just kind of throw this out there and see if anyone else has ever had similar experiences, or if they can point me to other resources (I've already checked out this site, webmd.com, mayoclinic site, and wrongdiagnosis.com for more info).

#2 jefa

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Posted 26 September 2008 - 05:57 AM

Welcome to the ISN Sclero Forums, Loyhargil (are you a Dr Who fan?)

Sounds like you have been dealing with this for some time now. I don't have any personal experience with localized scleroderma, but we have several forum members with morphea and linear scleroderma, though not necessarily both. Hopefully some of them will come forward. You may have already read the information our main site, but I include the links to both pages so you can have a look at the sections on patient and caregiver stories for each to get an idea of what others may have experienced.

Localized Scleroderma: Linear

What is Morphea?

Meantime, I hope you get a referral right away for the rheumatologist and that some help will soon be forthcoming.
Warm wishes,
Jefa

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#3 Carol Lee

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Posted 26 September 2008 - 11:30 AM

I have had linear scleroderma and systemic sclero diagnosed 1985. I am now 56. I have linear sclero on my scalp on the top of my head. This started when I was about 18 but was not diagnosed until I was in my 30s. I had been to 2 dermatologists that could not diagnosis. When in my 30s I started severe swelling of my rt leg also fatique and weight loss and nausea. Local doctors in my area could not help me so went to UCLA former head of the dermatology and he diagnosed both linear and systemic scleroderma. He was very helpful wonderful doctor. He sent me to a surgeon that did surgery to relieve the severe swelling of my leg. At that time there was no internet and it was impossible to get much information on scleroderma. I changed my lifestyle, working less and planning for less stress in my life. My health remained stable until I was 48 then started on prevacid for reflux and syntroid for hypothyroid. When I was in my 40s the linear sclero was not active and I even grew back hair that I had lost. But when I turned 50 the area became active again and remains active and slowly progressing.
I believe that you should find an expert doctor in scleroderma to help you. Scleroderma is rare and most doctors know next to nothing about it and will not be helpful. I hope you can find a good doctor to help you.
Carol

#4 razz

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Posted 26 September 2008 - 06:15 PM

Loyhargil,

I do not have morphea or linear scleroderma but I did want to say welcome to our ISN family. Your story impressed me in how through the years you adapted and didn't let the symptoms of localized scleroderma rule your life, especially at such a young age. You are on the right track by researching and eventually seeing a rheumatologist. Hair loss and fatigue are common traits in autoimmune diseases. Once you've been seen by a rheumatologist and had testing done, hopefully you'll know for certain what you are experiencing.

Also, congratulations on the birth of your son! I know you are enjoying every day with your beautiful precious baby! :)

Hugs,
Razz
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#5 Loyhargil

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Posted 27 September 2008 - 03:49 AM

Thank you all, I appreciate the input!

I'm hopeful about the rheumatologist. I just wish I could get the referral quicker. Back when I was 19, I just didn't bother finding out more about it (although like was pointed out, it's not likely I could have found much anyway).

Guess I'll just wait and see what happens here. Thanks again very, very much!

#6 Loyhargil

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Posted 27 September 2008 - 03:54 AM

Oh, Jefa, I can't believe I missed what you said the first time about my name.

Yup yup, I'm a Doctor Who fan! Nice catch on the obscure reference! :-D

#7 Loyhargil

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Posted 13 October 2008 - 08:35 AM

Okay, I had my appointment with my general practitioner today. I have to admit, this is the first time in my life I've gone to a non-specialist, said the words, "localized scleroderma," and had them not look at me like an idiot, it was quite refreshing!

Explaining the fatigue, headaches, and increased joint pain to him, he immediately ordered bloodwork and took it right there in the office. He's doing four screens total, although all I remember are the quantative ANA and the ENA. But he said if we get a hit on any of the four, he's immediately referring me to a rheumatologist. He said he's going to be looking for Lupus and other diseases, too.

This was actually a good experience. In my old home state, anytime I talked to a doctor about 1 - joint pain, 2 - fatigue or, as I explained earlier in the thread 3 - showed them the brown patches of skin, they told me 1 - take a Tylenol, 2 - get outside more and exercise so I won't be so depressed, or 3 - "Rub jock itch medicine on it!" :-P

In my new home state, I finally have a doctor who recognized localized scleroderma, immediately pegged the biopsy scar, agreed my fatigue is at unnatural levels, and wants to actually track everything down.

What a relief.

#8 Margaret

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Posted 13 October 2008 - 12:52 PM

Loyhargil ,

That is good news to find an open minded doctor and one who will listen to you. My son has been fairly lucky with his doctors, too, but there are many on the forum who haven't been.

Take care, Everyone.
Margaret

#9 razz

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Posted 13 October 2008 - 12:58 PM

Loyhargil,

Thanks for letting us know how your appointment went today. And, how fantastic is that to have a doctor recognize (and not a specialist) what you have, order the proper tests and tell you the fatigue is real! I am so happy that you found a good general practitioner. Hooray!


Hugs,
Razz
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#10 beedee

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Posted 13 October 2008 - 02:04 PM

Hi Loyhargil!
I have localized scleroderma (morphea), as well... We've been treating it for a year now with different methods and nothing is really working. I was diagnosed when a year ago at 19 years old. I don't have a whole lot of symptoms besides the spots themselves, I do find that the areas where they are do ache sometimes. I see my dermatologist on a regular basis, and I am constantly reading and researching.
I am so happy to hear that your general practitioner appointment went well today! I started going to my general practitioner in February, when he opened his clinic, he had been in the emergency room before that. When I went to him first, he didn't mind admitting that he has never seen morphea before, but he knew what it was, and is very interested in it still. I guess I am kinda educating him on it. haha
As well, regarding the blood work, when I had a lot of tiredness and the morphea was getting more agressive, my dermatologist became concerned and ordered the bloodwork to check for possible systemic scleroderma. My ANA and ENA were checked as well, some other ones I can think of are SCL-70, CBC, and ones that indicate organ involvement (I think)... Mine all came back good.
But I am so happy to hear that things went well, your general practitioner seems really on top of things, and we need that!

#11 canon

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Posted 13 October 2008 - 03:50 PM

Hi Loyhargil,

Will attempt replying again. I think I deleted the first message.

Welcome.

Read the part about bruising and I too had that in my joints 8 years ago with this last continual round of things. My thyroid, menapause and everything else at 48 tried to do me in. Protect you joints with padding (elbow protectors) especially if they are the worst areas; they were for me. Very tender area. The bruising was wide spread. The medication keeps everything most of the time at a dull roar.

Keep a t-shirt on or something simular under another shirt to keep you core temperature stable. Have you checked your temperature to make sure you don't have one? With everything that is happening maybe your rheumatologist could see you sooner. Some of them would like to see your symptoms? Try a non scented lotion for sensitive skin, it might help you. A change in temperature to colder temps makes itching, dry skin worse and can also cause other changes in your body.

Keep you in my thoughts.

Judy
A happy heart is good medicine.

#12 Nae

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Posted 14 October 2008 - 04:59 AM

Hello,

from my little experience with morphea (i have one, very small and now inactive), I think that severe morpheas can progress ever if they went inactive before (by "severe" I mean with ANA etc ...), but some treatment can help to controll them (cortizone ...).
For the singles morpheas, or little morpheas, with no ANA or other antibodies I think that it stabilize within 5 years ~ then stabilize with no relapse.

I hope that my english was good :P

#13 beedee

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Posted 14 October 2008 - 11:16 AM

The english was great! :)
One thing I have found with morphea, is that it is incredibly unpredictable! When my one spot of morphea spread all over my arm and my hand, my dermatologist seemed surprised and became more aggressive with treatments. In my opinion, I don't think physicians can really tell if the morphea will actually never come back, I could be wrong with that, but it does seem like a very uncertain disease. My ANA is negative, and I don't think it necessarily determines how bad the morphea is, there are people with full-blown systemic scleroderma who have a negative ANA. I could be totally wrong on that, please correct me if I'm wrong.
It sure is interesting, isn't it?

#14 aauroraskye27

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Posted 06 June 2009 - 07:10 PM

i dont know if you have read my story or not, but I can relate to your situation. if you get a chance to read it, and would like to talk about things.please email or send a private message me.

#15 Jeannie McClelland

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Posted 07 June 2009 - 03:36 AM

Dawn's story can be found here.

Warm wishes,
Jeannie McClelland
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#16 Sheryl

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Posted 07 June 2009 - 01:26 PM

Dawn, I would just like to welcome you to ISN forums. I am sorry to hear that you are getting a divorse and will be raising your children by yourself. It is hard enough with a spouse to make sure our kids get the attention they require and deserve. I hope you have family members that are very supportive of you and the decisions you are making this year. It will be hard for you to keep your stress levels at bay to keep scleroderma issues from mounting and making you privy to some of its pitfalls. I hope you make many new friends here and you can help others with some of the issues you are dealing with.
Strength and Warmth,
Sheryl

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