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Hi, I'm Karen, And I'm Freaking Out!


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#1 kselibrary

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Posted 03 November 2007 - 01:25 PM

Hello, my name is Karen. I am 48, almost 49, and this past week told I have morphea.

I have 5 dime sized spots on the small of my back.

I have several questions but prior to that, here is some background health info.

I have had IBS (diahrea prevalent) for 20+ years. Deal quite well, I think, with that.

2 years ago, I had severe itching throughout my body, dianosis...nerves. Um, ok??

Last year the same itching, less severe (about the same time of year, and the same duration. It comes about April when we go to the Caribbean, stays for 2 months and leaves). I was sent to my Internist, who sent me to the Endocrine (had some elevated calcium levels) who sent me to the allergist, who gave me Zyrtec, told me it was systemic itching he couldn't figure from what...and sent me on my way. Again...after about 2 months the itching subsided.

I have dry skin. I only have to wash my hair twice a week. The skin on my hands is not puffy or tight, it is loose and wrinkly! :D

I do have Raynauds. As does my mother and several cousins. I just thought this was a 'family' illness. I do not have it severe. It does make the top digit of my fingers white, then blue, then red...but if I warm them slowly under warm water they are fine within moments and if I go out to x country ski, by the time my blood is pumping I can remove my gloves and not suffer Raynauds. I do also get it in my toes if they get cold.

Due to major stress (son with trouble) in my life, I have been battling some stress type issues. Crying, depression, etc etc.

I go to the doctor because I got a piercing that became infected, he is giving me a look over while there, and spots the spots on my back. Sends me to the dermatologist.

The initial diagnosis is Tinea Versicolor. I get some cream for it, and use it for 3 weeks to no use. The spots are dime size, 5 in all, and have a white, rough appearance. They are hard, and dry. The new diagnosis (prior to biopsy results) is Morphea.

I am also suffering severe vaginal and anal itching at this time and go to my gyno on Tuesday for a vulva biopsy to rule out lichen sclerosis. But was in just last week for my yearly, and she said, the tears she was seeing and the color was not typical of a lichen sclerosis, but more like a dermatological anomaly, like allergy, etc. No white skin there, as is typical with lichen sclerosis, or parchment like skin.

Alrighty then, here are my questions.

1. For those of you with itching, was it before diagnosis?
2. Did you itch all over, from within, and scratching your skin brought no relief?
3. When you had the itching did you have other scleroderma symptoms as well?
4. Anyone with localized morphea, did you itch all over?

5. Next steps...what should I do?
6. What type doctor do I go to next?
7. Blood work tests I should make sure I have.

8. Questions I should as the doctors

9. I'm so freaking out. I can't help it, I am an avid overthinker and lost a neighbor to scleroderma a few years ago. Truly this is freaking me out, which I know is not helping.

10. My skin is not tight anywhere. My hand skin is loose, crinkly and well, dry, but I don't drink much water. Does the symptoms of skin tightening happen 'generally' in a particular order. ie...hands, forearms, face...or can it begin anywhere?

11. Morphea...I understand that the biopsy will show scleroderma (if that is what this is) but won't tell if it is systemic or local. I really want soon (because I am going to lose my mind) to have the tests run to show the difference. After bloodwork is done, what is the turn around time on results?

Wow, what a lot to ask and lay on you all. I know from posting on the ibs boards that more information is better than not enough...

I just covet your help. I covet your experience. I hope for your guidance and reassurance.

Thank you all...I can't tell you how much I am looking forward to any replies.

gentle hugs to you all, brave and beautiful people walking this road.

Karen

#2 barefut

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Posted 03 November 2007 - 04:01 PM

Hi Karen,

First of all....Deep Breath....

Sometimes too much information can be not a good thing. Sounds like you are overwhelmed.

My son was just diagnosed with Tinea Versicolor. I am surprised that Morphea could be mistaken for that. I am also surprised that your doctor said morhpea before the biopsy results were in.

I have occasional intense itching in spots, not all over. I don't use anything special for it, just moisturizers. My itching came after my diagnosis of diffuse sclero. It does feel like it comes from within.

If you are wanting to rule out scleroderma, you might want to get a referral to a rheumatologist and/or scleroderma specialist. There is a list of specialists here on ISN.

Have you and your general practitioner discussed your fears?

Keep a journal of all your symptoms, no matter how seemingly trivial - when they began, how long they last(ed) and what (if anything) makes them better.

Please try not to read too much before (and even after) you get a diagnosis, if you do. Even though it is true that knowledge is power, I can tell you from experience that reading too much online will only make you freak out more.

You did the right thing posting here! I found that talking to real people in the know was more comforting than reading alone.

Hang in there; don't forget to breathe!

Love,
Barefut

#3 marissa

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Posted 03 November 2007 - 04:06 PM

Hi Karen, welcome, I have morphea also. I found this out from a biopsy. My morphea is roughly on about 60% of my body. I usually start itching when I have a new spot or my older spots are growing. I have taken PUVA treatments for this and also go to a Rheumatologist. I have been on several different anti-inflammatory medicines. I have recently moved to Memphis, TN, so I am starting from scratch with all new doctors. I am very lucky to have a great Scleroderma group here that is headed by a great doctor. I am starting to get really out of breath lately, can't sleep, horrible pain from my hands all the way up to my shoulders and so fatigued, so I'm starting to think there is something else going on here besides my morphea. There alot of people on this message board with alot of great information. I hope we can help. Bless you. Marissa :D

#4 truman

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Posted 03 November 2007 - 06:48 PM

Karen:

First, calm down a little. I just found this blurb "In most cases, both localized and generalized morphea improve spontaneously over time (typically 3 through 5 years); however, patients are often left with patches of darkened or discolored skin and, in rare cases, muscle damage."

As a matter of fact, I was just at my rheumatologist who told in time (years), my tight skin would again begin to loosen. In the interim, he has started me on a low dose cancer medication, and I must say, after the initial dose, I am beginning to feel results already!

As far as your questions:

First and foremost, find a good rheumatologist. This is the doctor who is going to guide you through the proper medications to control, ease and comfort you.

Keep your Internist and/or general practitioner copied on everything.

Most importantly remember, it is what it is. Meaning? Meaning don't avoid doctors and look the other way in the hopes it's going to go away. Once I got over the shock of the diagnosis, I began to calm down enough to get control over the situation and my choices and begin to rationalize how I want to deal with this.

I've been fortunate in that my case is greatly limited and that my recent visits with my general practitioner and rheumatologist have been positive.

In addition, I never knew that a website such as this existed, let alone provided a wealth of information, contribution and friends. It was when I found this site, that I realized I was not alone, not an oddity, and part of a beautiful circle of friends.

Hope I've helped a little bit.
Tru

It is what it is...........

#5 jefa

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Posted 03 November 2007 - 08:48 PM

Hi, Karen. Welcome to the ISN Sclero Forums. As you can see already, the forum is a great place for support and information. You have been given some excellent advice in not going overboard with the research until you get a solid grounding from your medical team. It is not easy advice to take, especially since you have already lost someone to scleroderma, but remember it is a fairly rare disease. A good place to start, since you have already been told morphea is suspected, is our medical page on Localized Scleroderma: Morphea. Dry skin is a pretty common problem in the general population. If you have dry skin, it is important to moisturise regularly and not bathe or shower in hot water as it can strip skin of natural oils. You mentioned that you don't drink much water. You really should start drinking more water. Water is your friend. And relax. Stress is no good for anyone, with or without an autoimmune disease. You are among friends.


Warm wishes,
Jefa

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#6 jefa

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Posted 03 November 2007 - 08:52 PM

Hi, Marissa, and welcome. I seem to recall your name - were you with us before your move to Memphis? Either way, I am glad you have found us (or found us again). I am sorry you are starting to have other problems besides your morphea. Please let us know what the doctors say about this.
Warm wishes,
Jefa

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#7 kselibrary

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Posted 04 November 2007 - 03:22 AM

First of all, what a blessing to wake up this morning, and find your replies.

Thank each and every one of you for taking time to talk to, reassure, and even admonish me. Retired library employee ~ over researching is an occupational hazard.

Barefut,

My husband is aghast that the dermatologist would even say it was morphea to me before the biopsy was back. Although after my exhaustive (sic) Internet reading, and looking at pics, I do have to admit, it looks like morphea. I guess if it looks like a duck, walks like a duck and turns white and hard like a duck...it's likely a duck. Who knows.

Thank you for the ISN suggestion on doctors, unfortunately my insurance does not cover University of Michigan Hospital. I'll begin searching today for rheumatologists or specialists that are in the healthcare network I can use.

My question still is, however, even if I get a morphea diagnosis, how does a rheumatologist doctor take that information and then come to any conclusions on if it is systemic or local?

I'm so trying to breathe...I'm notoriously bad for being anxious. And when 'stuff' has been going on for 2 years that is unexplained and then all this happens, your head, it goes all over the place with this. Or mine does.

Thank you for your words.



Marissa,

I am glad you feel confident in your move to Memphis. I hope the doctors you find there suit you, and listen as well as help and teach.

You say you begin itching when one grows or a new one appears. Do you itch at the site of that new growth, or do you have general all over itching. I get general all over itching.

If I understand it correctly you have morphea that doesn't just affect the dermis, but has muscle damage as well? I'm so sorry for your pain. Not being able to sleep must only make it even more hateful.

I keep reading on morphea that it starts out with the white/ivory hard skin then gets this red halo around it. Mine is over 6 weeks old, and still the same size, same white, rough, hard, dry skin, no halo. I also have 4 of those red spots (sorry the term escapes me...little red spots from blood vessels) but they are on the front of my abdomen, none on the back.

I wish you much luck with your new doctors, and new life.


Truman,

:mellow: I promise I am trying to calm down. Hyper by nature, and again...I did myself no good by reading too much, and yet I feel this compulsion, even now, to read more. It is like a viscious cycle! I hate it, and that about myself. See...I can admit faults though ;)

I had also, in my attempt to figure this all out, read that blurb about generalized morphea. Here is my question for you. I want to know how one goes about finding out that their morphea is ONLY generalized, or how involved it is. Hubby looked this morning and says one of the spots looks substantially lighter, I've been putting cortosteroid ointment on it, and that none of the others has grown in 5 weeks or so. I guess my fear is that they say it looks to be general, and then later on because of misdiagnosis they say it is systemic (is that even possible, or errr...maybe I don't want to know this yet) and I've had years going by I should have been watching it and it is worse than it would have been with a good diagnosis and treatment. SEE...over thinking is a curse, I so wish I could toss that cap in the dust bin!

You, Tru, have helped me a great deal, as have all the replies. Thank you.


Jefa,

I know the advice is hard to take, and I've already this morning not taken it. I believe I just told on myself ... bad me!

I have begun trying to drink more water, it is a chore for me...I will persevere.

I read the Localized Scleroderma:Morphea information and it only make me have more questions and want to read more. I am trying to refrain from that though.

IF that is morphea on my back, it does not really itch. It does nothing, but sit there, look ugly, hard and dry. I asked the dermatologist, when he said Morphea if that was something that would eventually kill me *yes I did* and he said, NO...and it won't affect you unless you are a back model or something. I'm thinking I may want a new dermatologist?? How can he tell me that when he
a. doesn't know what it is yet for sure
b. has no clue if the morphea is localized, or systemic, or whateva?

yep...I'll have to consider that.

Thank you for your help as well.



I guess still and all, my concern is the systemic (of course it is) and yes, our neighbor dying from it has me very anxious.

Is there a fail proof way to prove or disprove systemic scleroderma?

Sorry for the redundant and all over the place thought...for me, with understanding comes peace. I'm ready for some peace!

#8 jefa

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Posted 04 November 2007 - 04:23 AM

Hi again. Karen, I guess I should have given you are other page - What is Scleroderma? On that page, you will find a discussion of types.

See Types of Scleroderma for further explanation.

As you can see from this excerpt, if you have morphea, you have a localized form which affects only the skin, not the internal organs. So your dermatologist was right. Your general practitioner or Rheumatologist can give you an ANA panel blood test which may help pin down diagnosis, but there is no foolproof way to prove or disprove a systemic diagnosis in the absence of clinical systems. Sweetie, just relax a bit. Wait for your biopsy results and hang out among friends.


Warm wishes,
Jefa

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#9 kselibrary

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Posted 04 November 2007 - 06:56 AM

Thanks Jefa for information on how to post a pic...




I have posted pics of my back with the 'suspected' morphea on the gallery.

for some reason they are showing a bit...oddly, kind of shaded. I probably did something wrong. :blink:


Any of you with localized scleroderma (morphea) does it look like that?



Heading out on a date with hubby day.

I hope you all find some unexpected happiness in this day.

Thank you again for your guidance, help and ... for some peace!

Karen

#10 truman

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Posted 04 November 2007 - 11:07 AM

kselibrary

Until you wrote here, I never really connected that I have the same dime spot on my arm. As I have said here before, I am fortunate I that only my are is affected at this point. I have no internal connect, so I'll deal with the dime shaped issue as warranted. As far as itching, I had head to toe itching for about a two week period.

I've decided to take each issue as I have the last 16 years, one issue at a time.
Tru

It is what it is...........

#11 kselibrary

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Posted 04 November 2007 - 11:57 AM

Tru,

May I ask how long it has been since your diagnosis?

#12 marissa

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Posted 04 November 2007 - 04:30 PM

Karen, I would say that I have itching on or around the new or spreading spots. It's so hard to tell since I have soooooooo much skin involvement. I just noticed last week that it is spreading to my face, which I don't like. I can't wait to see my doctor on the 19th. I can say that my spots are not hard and white, they are smooth and ugly. I am going to ask for another biopsy when I go to my new doctors, I'm not at all happy with any of my doctors before I moved, so I am going to start from scratch with all my tests. I hope I can get some answers. I know that you should try not and get so stressed out, but it is really hard to do. You will be in my thoughts. Bless. Marissa.

:rolleyes: :D

#13 Sweet

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Posted 05 November 2007 - 12:55 PM

Hello Karen and Marissa -

Looks like you've received some great information, links and advice here, so I just wanted to make sure I welcome you both!!
Warm and gentle hugs,

Pamela
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#14 kselibrary

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Posted 06 November 2007 - 01:58 PM

Thank you Sweet.

I had THE BEST call from my local Scleroderma support group leader. WOW. Talk about peace that comes with further understanding, a sympathetic ear, the voice of reason (and I mean her voice, it was just...hearing it, it makes me cry now...compassionate and kind, longsuffering and beautiful).

I have my appt with the rheumatologist on Tuesday next. He wants me to wait til I get to him before I have my general practitioner send me for the blood tests, but for peace of mind, I want to go in with at least some of them. Is that unreasonable? I don't mind being poked twice, and ... I really want them done.

Today was a good mental health day :blink: The past 4 have been spent worrying so much, freaking out entirely...I think I finally wore myself out with it.

I'm itching like the devil...probably from stress.

The spots on my back seem to be staying as they are, not growing, not sinking in...and also seem to be not so white!

Hubby says if we get that biopsy back tomorrow and it is not morphea...he is going to go hug that skin doctor, then punch him in the mush for scaring me so before he actually had conclusive evidence :o

Today I had the gynecologist, tomorrow the gastroenterologist, Friday the skin doctor, and Tuesday the Rheumatologist. I think I need a personal secretary!!! ;)