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Confused and terrified


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#1 Snoopy

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Posted 02 June 2008 - 06:36 AM

Hi,

I have not been diagnosed with anything (yet). I had achiness, fatigue and headaches in the fall of 2007. Negative then for Lyme, Lupus, RA. ANA was negative. Then, no more fatigue in April 2008, but still achiness - pretty much only in the arms. Then a positive ANA, but no titre or pattern listed. Just 210. Dcotor said weakly positive, and many women have this after childbirth. But she recognized my anxiety and did another ANA. Then 315. Rising. She said the test was a "blunt instrument" and I was likely one of the positives with no real disease. Again, to ease my anxirty, she did ENA which came back with SCL-70 236. Negative for lupus, RA, etc. She is sending me to a Rheumatoligist, but still thinks that I am over-reacting. Doctor gave me some xanax for the anxiety, which helps minimally.

My question is - how high does the SCL-70 have to be to have the disease? My only symptom right now is achiness in my arms and for some reason slightly bloodshot eyes off and on. I am terrified and this disease sounds difficult. I have a two year old daughter, and I want to see her grow up.

If any of you can give me suggestions or reassurance, I'd appreciate it. I've read several message threads, and everyone seems to be nice and welcoming.

Thanks.

#2 Sheryl

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Posted 02 June 2008 - 10:15 AM

Snoopy, welcome to our happy spirited group. I was happy to read that you don't have Lupus or Lime disease or not even RA that is quite good. Read and learn from our group. Ask questions. There are people on this board that have had this disease for 20 to 30 years. You could and may live a very long time. None of us know what will happen with this disease. I have the limited version. So I am better off at the moment than the people who get hit hard and fast with the diffuse. We are here to keep each others spirits and hopes alive. Give laughter and lots of hugs and emotional support. You will make many new friends here, and most of us feel and try to make others feel like we are one big happy family. Thanks for joining us. Write us and ask questions. We are here for you.
Strength and Warmth,
Sheryl

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#3 Snowbird

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Posted 02 June 2008 - 10:54 AM

Hi Snoopy

Sorry, I don't know how high the SC1-70 has to be.

Mine is the centromere pattern for Systemic Scleroderma Limited/CREST (which is not SC1:70). I understand that 1:40 is said to be the range for this particular type and I have also read that 1:60 can also be the range. So, in other words, anything higher than that should be investigated as it could possibly be indicative of an autoimmune disease (hence my doctor sent me to the Rheumatologist because mine was very high). My doctor also told me the ANA test is the most unreliable as it can be false as well. So it sounds like your doctor is just being thorough too which is a good thing.

Try not to scare yourself any more that you already have even though I know it's hard. It's our human nature to keep reading into things and then our imaginations get the better of us...but try to wait until you see the Rheumatologist, remember the old saying...no point in worrying until you know there really is something to worry about. I made the mistake of reading everything I could find on the internet too, not a good thing to do. As Sheryl said, this is a great site with caring people. Keep asking your questions here. They are very caring, informative, and more importantly, factual.

When is your Rheumatologist appointment?
Sending good wishes your way!

#4 Shelley Ensz

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Posted 02 June 2008 - 03:43 PM

Hi Snoopy,

Welcome to Sclero Forums! I hope we can help answer some of your questions.

As it happens, every lab can have different ranges for SCL-70, so the number itself doesn't mean anything without the accompanying information from your test (such as, what the Normal range is for your lab). So you'll really need to either get the lab work or perhaps call and ask your clinic nurse to explain it in more detail. Your doctor really should have told you whether your results are "positive" (meaning bad) or "negative" (meaning good).

Do see the rheumatologist as scheduled, but keep in mind that scleroderma has dozens and dozens of symptoms and is never diagnosed based only on blood work or such a generic symptom as achiness. Plus, over 20% of all lab tests are wrong (and I think in some labs it must be even higher than that!).

Achiness itself is not considered to be a symptom of scleroderma that directly adds to a clinical diagnosis. Systemic scleroderma is diagnosed based on more precise symptoms, such as pulmonary fibrosis and/or tight skin. And there are literally hundreds of very common conditions far more likely to be the cause achiness than scleroderma (which is very rare).

In fact, I'm not quite sure how/why scleroderma would be zeroed in on at such a preliminary stage, with no other symptoms, unless you insisted on that particular test, for some reason or if you have symptoms beyond what you mentioned. If you check WrongDiagnosis.com, you'll see over 293 possible causes of achiness. And if you take achiness and fatigue together, there's still a whopping 152 possible causes, including even very simple things like dehydration.

So, I'd think it's rather too early in the game to hit the panic button. Definitely time to do everything to quell the anxiety, since that can be very disabling (and fatiguing!) if it is left unchecked. If a few weeks on meds aren't very helpful to you, you may want to ask for a counseling referral, to help get over the hump. Often times we are scared when first faced with the prospect of illness, especially if we have always been quite healthy and never had to develop skills for coping with chronic symptoms or illnesses. So we have a whole section on our site for Emotional Adjustment, as well.

Like Sheryl mentioned, even if it is the very worst outcome and you do have scleroderma, it is still not the end of the world and you are still likely to live a very long time! I know you can't really look on the bright side until the meds kick in :blink: but we're here for you and it will be better than you think. Honest!
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.

#5 Snoopy

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Posted 03 June 2008 - 02:22 AM

Thank you all for responding kindly. I see the rheumatologist today. Although I now only have achiness, my symptoms started in the fall of 2007 with headaches and fatigue. Those have disappeared, but the achiness remains. The SCL-70 normal range as listed on my lab test results is 0-99. Mine is 236. High. I know that I haven't really got the symptoms of this disease, but I am afraid that my SCL-70 score means that it's coming. I hope the rheumatologist is helpful. I don't know why my doctor tested for this in the first place, and she hasn't been helpful at all - in fact, when I went to the appointment after the test she told me the results were normal for both the blood and urine tests. That night, when I got home, I remembered that I hadn't given a urine sample. She was reading someone else's test. When I got the correct test from the office the next day, she wasn't there to interpret the results and she called and left a message 2 days later that she still thought the result was normal. Anyway, thank you all.

#6 janey

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Posted 03 June 2008 - 03:28 AM

Snoopy,
I hope all goes well at the rheumatologist today. Take in a list of questions and symptoms. It's always easy to forget things once you get in the office. The list helps jog your memory. Doctor visits can be so overwhelming at times.

Welcome Darlin'. Look forward to hearing how things go today.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#7 Snoopy

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Posted 03 June 2008 - 09:36 AM

Hello all,
Just to report back. I saw the rheumatologist. He said I should throw out the test with the positive SCL-70 number. He said he rather thinks I have (if anything more than anxiety) fibromyalgia. My symptoms don't correlate to scleroderma he said, so the number by itself is useless. I asked whether the number means I may develop it in the future, and he didn't answer clearly but basically said "no" because he doesn't need to see me again. He requested one more blood test for some predisposition for a thyroid problem (mine's normal right now) in the future which can apparently correlate to a positive ANA number without an autoimmune disease. None of this makes any sense to me, and despite what the doctor said, I am still nervous about this disease. If anyone thinks a second opinion is recommended, please let me know. Thanks for your help.

#8 Shelley Ensz

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Posted 03 June 2008 - 11:38 AM

Hi Snoopy,

Thank you for reporting back on your rheumatologist visit. I may be wrong, I often am, and please keep in mind I have no medical training at all!...but given the lack of any distinct symptoms, combined with the typical 20% error rate in lab tests, I just don't see that you could possibly get a diagnosis (of anything like scleroderma) even with a second opinion.

However, you might want to ask your general practitioner to evaluate you for fibromyalgia, since the rheumatologist mentioned it. It entails a very simple tender point exam, among other things. (Did the rheumatologist do this?) Fibromyalgia can cause widespread muscle pain, fatigue, problems with sleep, and anxiety and depression.

The good news is that fibromyalgia is not fatal, and is somewhat treatable. At least, if you know you have it, you can have ideas on how to manage it better, such as evaluation and treatment of underlying sleep disorders, and so forth. The bad news is, fibromyalgia is often a chronic condition that requires careful longterm management.

If you somehow manage to pass a fibromyalgia exam, then you'd want to really seriously address all the anxiety issues, because that can be caused by physical ailments just as easily as physical symptoms can be caused by it (the very intertwined mind-body connection.) But by now they certainly should have ruled out all the basic things, with simple blood tests and exams, such as cortisol levels and listening to your heart, lungs, etc.

Besides, even if you do have some sort of mild, early sinister onset of a horrendous disease, or even "just" fibromyalgia (I use that "just" very loosely, there's not anything pleasant to say about it) -- then mastering how to cope with anxiety now would be an absolute necessity, because nearly all illnesses (except for things like a coma) have the potential to worsen any predisposition to a physical or emotional over-reaction to our environment, unless we firmly face it head on and learn how to lessen its impact on us.

I'm sorry you've had to go through such a scare! Please give yourself some time to calm down, and try your level best to refocus on some other major challenge in life. Such as a new hobby, an art class, the book you've always wanted to write, mastering crockpot cooking, country dancing, leisurely walks around a lake, or memorizing all of Shakespeare. Anything at all that helps us "change channels" also helps us cope better with other stressors in life (like health issues).

Well, here I am writing a novel! We care about you, and want you to find a way to feel calmer and more assured, in the near future...despite any or all of the ups and downs that life delivers.
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.

#9 Clementine

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Posted 03 June 2008 - 11:49 AM

Snoopy,
That is great news. I don't want anyone else to be with scleroderma. Will you still be our friend though? :)
I LOVE your screen name, by the way.
Jen

#10 Snoopy

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Posted 03 June 2008 - 01:07 PM

Thanks again for your opinion. Just to let you know, the doctor did give me a pamphlet on fibromyalgia, although I don't have the tender points per se. (Are you sure you're not a doctor?) I have perhaps four, but certainly not 11 or 18 of the tender points. He suggested Elavil for my symptoms and said it could assist with the anxiety as well. I believe that I do not have anything more than fibro at the moment, and I hope that my symptoms don't worsen or change. But now that I have delved into this difficult disease and found such nice and supportive people, I definitely want to become involved and help in some way. I knew nothing about this disease before, and now I see how little is known. If you know how I could help out - fundraising, awareness, assisting patients, etc., I would enjoy being involved. I live in New Jersey, about 30 miles from NYC. I'm sure there are people nearby who could use another hand....

#11 Snowbird

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Posted 03 June 2008 - 02:46 PM

Hey Snoopy

Glad to hear it's all working out ok for you.

Just so you know it's not always horrible, I also have Fibromyalgia and have had it for about 15 years....mine is very mild and hasn't stopped me from doing anything other than maybe some hula hoops and fast running, just slowed me down slightly....but I was never interested in running anyway...and on the flip side of that, I can't run very far anymore so my husband can always catch me!! Woo hoo! :rolleyes:
Sending good wishes your way!