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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 gemini2923

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Posted 16 September 2009 - 06:43 AM

Hello. My name is Katrina and I am new here. Although, from the moment I began sifting through the site and forums, I instantly felt like I was "at home," and where I belong.

I am an RN who works in an ICU. Have not been back however since March when the symptoms became too much for me (the painful ones that is). This all started in January though w/ numbness, burning and tingling in both arms. Shrugged it off until March.

Since that time I have been to my primary care, ER, neurosurgery, neurology, rheumatology and pain management. They have ruled out SLE, CTS, MS and RA. I agree. And the only clear finding so far has been a severe B12 deficiency and abnormal EMG results.

I am posting here today in order to seek opinion(s) from those who understand the complexity of scleroderma. I feel strongly this is the root cause of my body "going postal" on me. :) Tomorrow I have appt w/ pain doctor and I am going to request certain labs and x-rays be ordered. If someone/anyone can help me, I would be most appreciative.

I have already had a Scl 70, ANCA and RNP antibody (but never saw results).

I would like to have ordered (based on finding from medical journal article) : ACA, Scl 70, Th/To, RNA Pol 1, RNA Pol lll, U3 RNP, U1 RNP, PM-Scl.

Is this a fruitless request? Will results sometimes show + and then - and vice-versa? Is there a difference between ACA and ANCA? And if my RNP antibody was neg is asking for the U3 and U1 mute? (my original labs were ordered in May).

Regarding the X-rays - I had films of L/R hands done in April but since then my hands are twisting and now my elbows and shoulders are intensifying in pain to where there is no point in the day where I live without pain in them.

Thank you again for any replies. I am aware that no one here is a "professional" but you all have "been there, bought the T-shirt."

Sincerely,
Katrina

#2 Shelley Ensz

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Posted 16 September 2009 - 10:00 AM

Dear Katrina,

Welcome to Sclero Forums! I'm sorry you are sick and have concerns about possible scleroderma. I hope we can help you find some answers.

Regarding the specific blood tests, they are probably a little bit beside the point right now, at least in regard to scleroderma. The reason I say that is because scleroderma is a clinical diagnosis because many people with systemic sclerosis (scleroderma) do not have positive antibodies, whereas some people with positive scleroderma antibodies do not have scleroderma.

So, first things first. I'd start with the scleroderma symptom checklist, which you'll find in our brochure, What in the World is Scleroderma? Print that out, check off your symptoms, and take that brochure to the doctor with you.

I'm copying the list here:

Systemic Scleroderma Symptoms

Please consult your doctor if you have two or more of the following symptoms, which are sometimes due to systemic sclerosis (scleroderma). Systemic scleroderma may disqualify a person for life and/or health insurance in some countries. Sometimes certain lab work or biopsy results may force an unwelcome diagnosis into the medical record.

Circulation
 Swelling of hands, feet and/or face
 Raynaud’s: fingers and/or toes turn white or blue due to cold or stress
 Ulcers (sores) on fingertips or toes

Gastrointestinal
 Difficulty swallowing
 Heartburn (reflux)
 Constipation, diarrhea, irritable bowel syndrome

Heart, Lungs, Kidneys
 Shortness of breath
 Pulmonary (lung) fibrosis
 Aspiration pneumonia
 Pulmonary hypertension
 High blood pressure or kidney (renal) failure
 Right-sided heart failure

Muscles & Tendons
 Tendonitis, or carpal tunnel syndrome
 Muscle aches, weakness, joint pain

Excessive Dryness or Sjogren’s Syndrome
 Excessive dryness of the mucus membranes (such as eyes, mouth, vagina), which is sometimes called Sjogren’s Syndrome
Skin
 Tight skin, often on hands or face
 Calcinosis (calcium deposits)
 Telangiectasia (red dots on the hands or face)
 Mouth becomes smaller, lips develop deep grooves, eating and dental care become difficult

Many of these symptoms can occur by themselves or can be due to other things. Symptoms such as heartburn,
high blood pressure, constipation and muscle aches are common in the general population. More unusual symptoms, such as pulmonary fibrosis or tight skin, may be more likely to lead to a diagnosis of systemic scleroderma.
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 Amanda Thorpe

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Posted 16 September 2009 - 10:33 AM

Hello Katrina

Welcome to the forum although I am sorry you're having undiagnosed symptoms and most of all pain.

I would agree with Shelley that symptoms rather than bloodwork are a good focus point at present, I am into my second year of diffuse systemic sclerosis and my ANA has always been negative. I was diagnosed on symptoms and a biopsy, bloodwork would have said I did not have sclero and let me tell you with about 70% skin involvement there was no doubt I did!

Having symptoms and no diagnosis is a difficult place to be so I hope you get some answers soon.

Take care.
Amanda Thorpe
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#4 Jeannie McClelland

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Posted 16 September 2009 - 10:56 AM

Hi Katrina,

I'm bouncing up and down wanting to say welcome too. (It's always nice to have a new Forum friend and the bouncing up and down is not only impressive, it gets that aerobic exercise out of the way too.)

I'm also no doctor and certainly wouldn't want to say anything was or wasn't so without being able to cite a hefty number of studies that are in agreement (scarcer than the proverbial hen's teeth!), but from a patient's standpoint and observation via this Forum, I'm in agreement with what Amanda and Shelley have said. (Was that too windy? Now what did they say?? Posted Image ) Oh yeah! Clinical Diagnosis. Right. I do have a positive ANA, but no skin involvement other than telangiectasia. However, I have pulmonary fibrosis, pulmonary hypertension, esophageal issues, peripheral neuropathy, joint and muscle pain. Oh yeah, Raynaud's and Sjögren's, too. How could I have forgotten them? The positive antibody was the least of the things that got me my diagnosis.

You'll know all the usual things like keeping a journal of your symptoms with date of onset, severity, and duration. I give a lousy history with lots of "Um, uh, seems like forever~"

All joking aside, I hope they can figure out what is going on soon and you get some relief. Trust yourself, your knowledge of your own body, and your assessment of the state of your health. Be your own best advocate, but don't hesitate to take someone with you to your appointments.

Once again, welcome. No bouncing this time, just a warm hug and best wishes.
Jeannie McClelland
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International Scleroderma Network

#5 gemini2923

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Posted 16 September 2009 - 11:44 AM

Thank you all, Jeannie, Amanda and Shelley. Your information is assistive to/for me.

Prior to my appointment I am going to review and understand the lab info provided here. I do have a question as a result of the replies. Do I read correct - often a person with systemic sclero has no antibodies? Then why does the medical community order them? For localized instead? Hmm, interesting if this is the case.

Prior to all this, I was in fairly good health. Never missed work and frequently worked overtime. Single, mom of 5 (grown), Grandma to 1. Not athletic but active in life. For "fun" I work in my yard. (I'm that goofy neighbor you see climbing a tall tree trimming it herself) Then January came... and (as a point of understanding me and not needing info about), my life changed with the following:

BUE: numbness, tingling, burning, “electric jolts” shooting down arms – with or without movement involved, hands swell at night with middle joints reddening/purplish, cuticle beds look swollen, shiny

Joints: elbows, wrists, middle phalanges of hands, ankles, hips ache and are stiff, positions (leaning forward, laying down) increase pain, middle phalanges turn red/purplish and swell (especially at night)

Neck/C-Spine: turn head to L limited, hurts to do, at times, stiff, aches, pain in bone and muscles

Mid/Low Back: stiff, bending difficult, aches – right side affected more than left, shooting “jolts” down legs, lose balance

BLE: ankle pain, achy, calves – cramps, numbness, 2nd toe cramps – bilaterally, numbness/tingling in thighs, feet swell, veins bulge

Skin: rash on neck equally both sides, shoulders and chest red, increases with touch and heat, petichiae

Vascular: veins in BUE “bulge” up to area of shoulders, can sometimes “hear” my blood flowing through head (swishing sound), veins below level of knees (especially RLE) bulge to appear varicose, blood pressure – systolic and diastolic 25-40 above baseline

Groin: External - numbness, losing sensation

Pulmonary: Shortness of breath, wheezing

And labs - phew, a ton of them..... but nothing that stands up and shouts, "look at me."

At times, I feel crazy, because if the labs aren't positive for anything, then it must all be in my head, but then my body reminds me it isn't.

I look forward to getting to know everyone, their stories, and maybe one day I can be of help to somebody also.

Katrina

#6 Shelley Ensz

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Posted 16 September 2009 - 01:46 PM

Hi Katrina,

Please keep in mind I have no medical training at all; not even a current First Aid Certificate to boast about, and verify everything I say with a reliable medical source.

Which of those symptoms would you attribute to severe B12 deficiency, and which to scleroderma?

And, have you looked into the possibility of Celiac Disease causing the B12 deficiency, or had that ruled out yet? (Not all people with celiac disease experience gastrointestinal symptoms or even weight loss; but it can cause severe B12 deficiency and other strange stuff.)

What is a bit unusual, just in considering scleroderma alone, is that you didn't mention (at least, not yet, and I know how it is when so many things are going on at once) any Raynaud's or gastrointestinal issues, which have a tendency to be quite prominent initial symptoms in systemic sclerosis; and at the same time, you are mentioning some rashes and other symptoms which could be due to other things (such as dermatitis herpetiformis among thousands of other things, of course).

Is the shortness of breath caused by pulmonary fibrosis, or has that been ruled out? That can be a helpful symptom in diagnosing systemic scleroderma.

As for the antibodies, they are sometimes useful in confirming a clinical diagnosis of systemic scleroderma that has already been made based on symptoms and certain other test results. But since they can be false-positive, they are never solely relied upon for a diagnosis of systemic scleroderma. The tests are run to try to give clinicians some clues as to which direction to look, but an absence of positive results does NOT rule out systemic scleroderma in people who have significant symptoms of the disease.

So, let's say, even if you did have some whopping positive Scl-70 antibodies, if you didn't meet the clinical criteria for scleroderma, you would remain undiagnosed until (or if) other symptoms developed.
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.

#7 imagine2

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Posted 16 September 2009 - 02:07 PM

Hi, Shelley, I'm new to this site and just have a question. you list symptoms of systemic scleroderma, my doctor says I have localized scleroderma. In the check list I have 1 to 2 symptoms in each of your categories, which my doctor is aware of. So I'm confused now about what type I have. Of all the sites I've been to I have never seen a check list like you posted. I found it actually to be very useful. Can you have most of those symptoms with localized scleroderma? Thanks for any info you can give me.

Robin

#8 Shelley Ensz

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Posted 16 September 2009 - 02:16 PM

Hi Robin,

Wow, I really hate to bust your bubble, but from everything you describe in your previous messages, it sounds an awful lot to me like your doctor intended to say "Limited Scleroderma" which is also known as Limited Systemic Sclerosis or Limited Cutaneous Systemic Sclerosis.

The only "limited" thing about Limited Scleroderma is that the skin involvement (if any) is limited to the hands and/or face. All the internal symptoms that can accompany diffuse scleroderma also apply. And, people with limited scleroderma are at greater risk for developing pulmonary hypertension.

Of course, if you read the other message I just posted, you'll know that I'm an official DIMWIT and you should always verify everything I say with a reliable medical source. Like, for example, the link above.
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 imagine2

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Posted 16 September 2009 - 04:25 PM

Shelley,

Honestly I've learned more from you in two days than I have learned from doctors in 5 years. Two years ago, my doctor was writing limited scleroderma on my paper work and then changed it to localized. Honestly I think not knowing is my own fault, I guess I didn't want to know. I actually had refused to let this disease consume me then. Its only occurred to me now to check into this because I just started feeling so bad.

I also became very irritated that the doctors seem to think its no big deal, or that it is all in my head. I also wasn't completely honest all the time with them, I would go and say everything is fine, just to get out quick. I did ask at my last visit, why my left foot keeps going as cold as an ice cube, and didn't get an answer, I'm so afraid of getting another ulcer. Have you had any experiences with that, and am I susceptible to more ulcers because I've already had one? You may not be a doctor, but I feel like you are going to be my saviour. Thank you for all your help. I hope you stay well.