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Biomarker for Diffuse Scleroderma skin has been discovered!


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Systemic sclerosys in observation


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#1 erika

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Posted 24 March 2010 - 02:26 AM

Dearest Forum!

I have announced my going to the local hospital to let the immunology doctors observe the possible Systemic sclerosis and I have done all the tests in two days. Was very satisfied with my new young doctor and how he has organised all my tests and took care about me. He was always somewhere around when I needed him.

I did blood testing, urine, EKG, ECHO, X rays of hands, feet, knees, hips, lungs and heart, and esophagus, spirometry and CO diffusion, skin biopsy.

Already yesterday I received the letter from the hospital on 2 pages elaborating the tests. They were quick! Here is what they say:

EKG was more or less OK with some extrasistoles (VES)

ECHO has found light mitral stenosis and no pulmonary hypertension (but the pressure is at the border level - 25 mmHg)- I m a little worried about this border level!

Lungs on X rays and breathing tests are okay (although I have frequent chest pain - must be my allergy?)

Exophagus - OK

X rays - degenerative changes of course (my feet are the worst - including osteopenia)

Skin biopsy - initial diagnosis was acrosclerosis but they found no pathological changes although normal epidermis is covered with thicker compact something (don't know that word in English)- It is a pity that they did not take the skin from my fingertips where I have changes (thin shiny skin and redness and pain sometimes)- they said it would bleed too much from the fingertips.

Urine -OK

Blood - this mass of imunologic codes confuses me the most. ANA is neg., RF 9,2, SE 4, CRP 0,5...All fine.
CH50 normal, C3 1,02, C4 0,26, aCl-IgM 6, aCl-IgG 8, LAC neg.
Not to mention electrophoresys of the proteins, Imunofixation normal...etc, etc

But I do not see Scl-70 nor anticentromere antibody - can they be determined from this or other imunologic codes? I have nobody to ask since the doctor has wrote me to come in 5 months? Anybody familiar with this? I need Doctor House, too!

The result is very vague: They did not find definite elements for systemic sclerosis diagnosis and they recommend further careful monitoring of the sick person (me!). Further working diagnosis is Colagenosys in observation.

I am not happy with having no diagnosis. My family and friends say: you see that you are perfectly healthy. But I am not! How long do I have to wait to get the diagnosis. 6 years average? This means 4 years more!

How bad do I have to be that it shows somewhere?

I am happy that the tests did not show any damage to my internal organs. I will check them regularly now that I know what tests to do. On the other hand I think to myself that my disease might not be speedy and terminal as it seemed to me.

The show goes on...

#2 Shelley Ensz

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Posted 24 March 2010 - 05:41 AM

Hi Erika,

I'm glad you had complete testing, and glad the results are basically good, but sorry they haven't yet identified what might be going on. It sounds like they are keeping you under observation for collagen disease though, and that is a good thing. It's good not to be so sick that a diagnosis is readily apparent; it's bad to be sick and still have the diagnosis escape you. We all know how that is, see those dire statistics on 6 years to diagnosis.

As I understand it (and keep in mind I have no medical training and may be wrong, I often am!), I think you need to first have a positive ANA for them to run the Scl-70 and ACA tests, as they are a subset of ANA. About 50% of people who are under observation for connective tissue disease, such as this, never manage to achieve a diagnosis more specific than that, because their symptoms stop developing or worsening.

So is that good news or bad news? I don't know. I'm sure you're not feeling 'perfectly healthy' or you wouldn't have undergone all this testing in the first place. I hope you can find some information on our Difficult Diagnosis page that will help you deal with your family and friends, in the meantime.

Here are some warm hugs just for you! :emoticon-hug:
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.

#3 warmheart

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Posted 24 March 2010 - 06:42 AM

Hi Erika,

Thanks for the update. I was interested in knowing how you made out at the hospital, and also to hear about how things work in other countries. Were you admitted into the hospital overnight for the tests? Years ago that often would happen in the U.S., but not these days!

I'm sorry you didn't get any definitive answers, and hope that something gets resolved soon for your sake, whatever that turns out to be.

Your experience was the opposite of mine recently. I went to see the rheumatologist (and sclero specialist) for the first time. He read through what must have been a mountain of files, mostly years old now, before I got there. He sat down with me and took my history, examined me, and confirmed that I do have scleroderma, but barely as far as my skin is concerned. No more GI tests (I've had plenty already in the past). No more bloodwork. Nothing except PFTs and an echo, and then possibly a chest CT. Yippee! I realized at the end that I'd been expecting him to tell me I don't have scleroderma after all and I was not pleased to hear otherwise, but he is great and I was so happy not to be put through the medical wringer again.

I'm going for my repeat PFTs very soon and then the repeat echo, and I've got to admit I'm a little bit scared. It sort of feels like looking into a crystal ball of my future (how's that for overdramatic). Hopefully my DLCO won't have dropped any more than it has already, and then I can laugh myself out of the office! :lol:

Erika, your doctor sounds nice; good luck with everything from now on!

Hugs,

warmheart :)

#4 erika

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Posted 25 March 2010 - 03:56 AM

Hello Shelley, hello Warmheart,

Thanks for your comments.

If I understood well if ANA is negative the other Scl-70 antibodies are also negative. Well I did not know that. Seems logical. It is a relief to know this. But I still do not understand how they diagnose sclero since most of people on this forum have ANA negative but they have a diagnosis. Well, it must be biopsy or more visible symptoms.

In my country (Croatia) we have wide social health security and every person that works pays from his salary compulsory health insurance for himself (this money is deducted form your salary even before you get the payment). Your children are also insured through this system. And wife/husband if they do not work. Additionally there is voluntary health insurance (also in governmental authority) which you pay if you want all medical services free of charge (except some medicines for which you pay participation).
Well where was I? I stopped writing for an hour and lost a point. Must be sclero symptom! :rolleyes:
I wanted to say that I was asked whether I wanted to stay in the hospital overnight or not. I refused because I would rather go home (it is my home town, I don't have to travel).

I agree with Warmheart about the crystal ball and the future. It is unknown. But life always is. It is like walking on the rope. You never know when you will fall. And it is good that you don't.

Just keep walking straight.

Hugs,

Erika

#5 warmheart

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Posted 25 March 2010 - 02:01 PM

Thanks again for the info about Croatia, Erika. So interesting! I have a neighbor from another Eastern European formerly Communist country. She goes back and forth, and over the years I've learned a lot from her about the system there--very different from ours.

What you said about life and the tightrope is so true. Guess the moral is just don't worry, be happy, right? And appreciate whatever degree of health we have while we have it, instead of wasting it by worrying about the unknowable future.

Hugs,

warmheart

#6 erika

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Posted 26 March 2010 - 04:01 AM

Don't worry be happy would be the best choice. But how can you be happy when every day you have another new sickness to deal with, another new symptom that scares you to death? That's a mystery to me!

#7 Shelley Ensz

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Posted 26 March 2010 - 09:56 AM

Hi Erika,

That's an excellent question you ask, I know exactly how your feel! It is very fair to ask, how can you be happy when you continually have new sicknesses to deal with?!

I've actually done a lot of personal research on happiness over the years. I happen to be married to what one could easily term one of the very happiest guys walking the planet today; and I'm not exaggerating in saying that, either. I think he is a total genius when it comes to happiness!

And here is what he says, which I totally agree with, after some rounds of trial and error. That is, that happiness is a decision. It is not a matter of circumstance, not due only to our genes (although they do help; he is by nature more sanguine and I am more naturally more prone to worry which needs overcoming), nothing to do with our childhood or bad luck, where we live, our family, our finances, our love life, our religion, our health, or our work. It is simply a decision to be happy, come what may.

So bring on the turmoil and troubles; that does not affect a decision to be happy. After all, when we decide to be happy, we can force ourselves to look upon the happy angle of things. Oddly enough, even if we suffer from depression, or are extremely ill, we can still make a decision to "think happy" and to do "happy things", it just takes tremendously more effort, if we aren't already in the swing of it. Please note that is my understanding that it is not true that people who are depressed cannot be happy or do happy things; nor is it true that just thinking happy will pull one out of depression, it is generally much more complex than that. So I am talking about unhappiness here, not about depression.

It is the misunderstanding of happiness, thinking it is something that awaits us on that ideal moment when everything in our life is absolute perfection; that we will be happy "when" -- when we find someone to date, when we get engaged, when we get married, when we get pregnant, when we have children, when the children go to school, when they graduate from high school....when we get a diagnosis, when we get a better doctor, when our symptoms all go away...when we get our degree, when we find a better job...when the dishes are done...when the house is clean, when we win the lottery...when when when!

We can WHEN it to death. Or we can decide, that right now, today, this very second, I am going to put a smile on my face and make the very best of this awful situation...that is WHEN happiness begins quietly seeping in our life. And each time we decide in favor of happiness and against unhappiness, we get a little bit more of it.

And if it isn't enough, then we can look at being happy WHEN we try to help someone else, by doing a favor or a good deed. Then we look around for people worse off than ourselves to see how we can help, and putting their woes into perspective with ours, well voila, there is a little less WHEN and a little more happiness, NOW.

I'm not saying you should be jumping up and down for joy over being ill. I'm just saying, that you can be happy even with the most dire, dread, fatal, awful, horrible illness on earth. Or you can be miserable as all get out over it. And I'm sure you've seen or heard examples, both ways.

The thing is, our attitudes always have the potential to be bigger than our circumstances, and when our circumstances take a turn for the worse, like with illness, that is a time to muster all the attitude on earth. It's one thing for illness to affect our bodies; it's another for us to let it affect our happiness.

Years and years later, having tried on different attitudes for everything, I have to agree with my husband that happiness is not a secret, it is not elusive or unattainable, happiness is a decision. A deep, firm, strong, and unrelenting decision that needs to pass the test of time and troubles and tribulations over and over again, for it to truly shine.

That said, certainly, I'm not happy every single minute of the day; I can feel just as miserable as anyone else. But when I do, with what I know, I also know that I possess the ability to change that, in an instant, by asking myself if the glass is half empty -- or half full? If I am honest with myself, I can always find the full, even if it is not something I would have chosen; any more, I am sure, that you have chosen to be sick.

But it has happened. So? So what. You will make the best of it, I know. And in fact, you already are, by joining the forum and making new friends, all throughout the world.

Is that enough to sprout a little, tiny smile on your face? :emoticons-yes:
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.

#8 Joelf

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Posted 27 March 2010 - 12:27 AM

Ooh, what a lovely, touching post, Shelley; if it didn't make me feel happier it would choke me up, if you know what I mean!! ;) :)

I'm also a naturally upbeat sort of person, blessed with a dry sense of humour; ;) of course sometimes I do feel less able to cope than others, but most of the time I thank my lucky stars that I'm able to enjoy my life, Sclero or not!!! :D

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#9 pinnygig

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Posted 27 March 2010 - 06:24 AM

Shelley,

I'd like to say thanks for that post. I had a horrific weekend last weekend - in hospital with a soaring temperature, vomiting, diarrhoea, upper gastric pain..etc etc. Apparently my liver function tests were horribly awry and the white blood cell count through the roof. Don't know how (or if) this all fits in with my other symptoms, but I can safely say I have never been so ill and so miserable.

It's taken me a few days to get a grip and recapture some sort of hope for a quality of life ahead, but I think I'm on the way and your wonderful post is just the sort of nudge I need. Thank you :flowers:

#10 erika

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Posted 29 March 2010 - 12:08 AM

Shelley,

I would never be able to write such an article about hapiness! You have tackled the topic from so many aspects showing real mastership in writing. Hat down! Thank you for refreshing this forum.

For me it is easy to be happy and look at the glass half full when I feel well. Some people can never do that even whey they feel perfectly fine. Rare are those like you and your husband who have decided to be happy and suceed in that. The older I get the more I worry about unknown. The children are grown ups, the job is steady, the winter is long with hazel pollen in the air (lungs constricted), cold outside, boring TV program, grumphy husband ... Time to stay inside and worry as much as you like... But nice days are comming, garden needs to be put in order... Yesterday was a beautiful day and my joints were OK, I spent the day pruning. Had no time to think about anything. Was happy, allthough this was not my decission. It just happened.

Erika

#11 Sandy B

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Posted 29 March 2010 - 02:22 AM

Hi Shelley,

Thought what you said was brilliant and so up lifting. When I feel lonely, sad, fed up, unwell or just having an off day, I always try to think positively or do something about the house, or something I enjoy doing, so I do not feel that I have wasted my time and energy on negative thoughts, There are always the odd days when negativity comes out of nowhere and jumps up and bites me on the bottom and I just can't muster that brighter more optimistic side and I wallow in gloom which does nothing to raise the spirits. Thank goodness those days are far and few between and generally I am able to remind myself that there are a lot of people out there who are far far worse off than I am, so despite all the health issues, I am reasonably content and at peace with my life.

Thankyou Shelley and take care Erika

Sandy B