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#1 POTScared

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Posted 04 April 2013 - 01:10 PM

Hi,

 

My name is Tiffany I am a 26 year old female chasing after an unknown medical issue. and I keep falling on  scleroderma sine scleroderma. I had a preterm delivery of a baby girl back in October and after that things went a mess. I was diagnosed with something called P.O.T.S syndrome. (Postural Orthostatic Tachycardia Syndrome) . Basically that means that autonomic nervous system (everything that is done automatically by the body is screwed up).

 

At the exact same time I started to lose a lot of weight (19 lbs exactly since November).  Its now April 2nd. I have had a lot of testing. EGD, Colonoscopy, RUQ ultrasound, CT angiogram of chest, EKG's, Chest Xrays, Back Xrays, Cat Scan of Abdomen and Pelvis, HIDA scan, MRI of my Brain. all of the sort. All have come back negative except for Gastritis in the belly.

 

These are the rheumatologist tests I have had

CRP- 0.1

ASA- 1:80 speckled

SED or ESR rate 29

 

So ASA and ESR +.

 

Symptoms I have for possible autoimmune are inflamed back and fat malabsorption.

 

I have no skin issues that I can tell, no Raynaud's syndrome, no neuropathy, no inflammation of fingers or joints -- except there are times I feel my back is inflamed. It hurts in the thoracic area.

 

I am worried for the Sine Scleroderma?

 

Should I go to a rheumatologist? Nobody can figure out WHY I'm losing weight. I'm scared. After losing my baby at 26 and then getting POTS, I just don't know what else I can handle. Thank you.

 

Tiffany



#2 Shelley Ensz

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Posted 04 April 2013 - 01:57 PM

Hi Tiffany,

 

Welcome to Sclero Forums.  I'm sorry that you lost your baby, have POTS, are losing weight, and are concerned about possible scleroderma. 

 

As it happens, we can't tell you whether or not you should go to a rheumatologist; in most health systems, that  decision is really up to your primary care doctor. Its my understanding (although I may be wrong, I often am!) that POTS, gastritis and weight loss are not symptoms that can be used towards a diagnosis of scleroderma, most especially with the lack of any other more specific symptoms.  So it would probably be best to ask your doctor what they think.

 

:emoticons-group-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 Amanda Thorpe

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Posted 04 April 2013 - 02:16 PM

Hello Tiffany

 

Have a look at our videos, symptoms of scleroderma, diagnosis of scleroderma and difficult diagnosis of scleroderma.

 

As Shelley has already said, the symptoms you mention are not usually associated with scleroderma. however, if you wish to pursue referral to a rheumatologist you need to discuss this with your doctor. As we are not medically trained we can't say whether you have scleroderma or not.

 

I am very sorry about the loss of your baby and the diagnosis of a difficult illness, I hope that you are able to quickly find an answer to the cause of your symptoms.

 

Take care.


Amanda Thorpe
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#4 POTScared

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Posted 04 April 2013 - 02:17 PM

Thank you. I know you can't tell me whether to or not; due to the ANA I'm taking the step to see a rheumatologist. It's a month wait, appointment is 4/12. I am actually in the hospital now awaiting my second colonoscopy in 6 months to see if they can see anything wrong, some doctors think its just chronic stress related severe IBS, yadda yadda, but I want to get to the bottom of it. POTS - that diagnosis itself is debilitating and there's sometimes reasons for it. And if its scleroderma I want to take care of my health!



#5 Amanda Thorpe

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Posted 04 April 2013 - 02:42 PM

Here's a quick overview of Symptoms of Scleroderma which the video is based on:

 

Circulation issues:

Swelling of hands, feet and/or face,

Raynaud’s

Ulcers on finger or toes.

Gastrointestinal issues:

Difficulty swallowing

Heartburn

Constipation, diarrhea, irritable bowel syndrome.

Heart, Lung, Kidney issues:

Shortness of breath

Lung fibrosis

Aspiration pneumonia

Pulmonary hypertension

High blood pressure

Kidney failure

Right-sided heart failure.

Muscles & Tendon issues:

Tendonitis

Carpal tunnel syndrome

Muscle aches, weakness

Joint pain.

Excessive dryness:

Dryness of the eyes, mouth and vagina sometimes called Sjogrens Syndrome.

Skin issues:

Tight skin, often on hands or face

Calcinosis

Telangiectasia

Mouth becomes smaller, lips develop deep grooves, eating and dental care become difficult.

 

Scleroderma is a rare, chronic, autoimmune, rheumatic disease Please consult your doctor if you have two or more of the above symptoms which can be caused by systemic scleroderma and you can also find these symptoms in our “what in the world is scleroderma” leaflet which you can find on our home page.


Amanda Thorpe
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#6 POTScared

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Posted 04 April 2013 - 03:00 PM

I just have the IBS symptoms, and muscle aches (BUT both of those are found in POTS patients frequently). Muscle aches more recently gone away since my stress level has gone down. I have had FULL high stress since last June when pregnancy started going back- had placental abruption - 2 weeks later was in Hospital with POTS; had a lot of tests- Colonoscopies, EGD's , EKG's, Chest angiograms, Chest Xrays, Back Xrays, CT Abdomen/Pelvis, HIDA scan, MRI brain, full evaluation by neuromuscular doctor, blood volume tests, thermosweat test, Thyroid Ultrasound, Thyroid Biopsy, CBC's, BMP's , AMylace, Lipase, SGOT SgPT , Immunology panel (IGG1,IGG2,IGG3,IGG4), Paraneoplastic Panels, Urines galore, Cathecolmene test, Thyroid function tests. I've had Holter monitors, ECHO stress tests..... I have been seen by an immunologist, cardiologist, GI specialist, general practitioner obviously, POTS specialist - all at the Cleveland Clinic Main Campus nooooooothing found. I just think if it was scleroderma that would see something on blood test or one of those tests . ugh :-( that's why I'm frustrated.



#7 Shelley Ensz

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Posted 05 April 2013 - 12:47 PM

Hi Tiffany,

 

Well, it will be interesting to see what your rheumatologist comes up with, so please let us know how that goes.

 

How did your colonoscopy turn out?

 

:emoticons-group-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.

#8 Joelf

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Posted 05 April 2013 - 10:42 PM

Hi Tiffany,

 

Welcome to these forums!

 

I'm very sorry to hear that you've been having so many health worries and have also had the awful stress of losing your baby. Sometimes it does seem that when we feel we can't cope with anything else, another problem arises which just seems to make everything overwhelming.

 

Both Amanda and Shelley have given you lots of helpful advice, to which I can't really add anything and Amanda has given you the link to our medical pages explaining how difficult Scleroderma is to diagnose, not least because it manifests itself in so many different ways. Hopefully your rheumatologist may be able to advise you further, once the results of your tests are known and correlated .

 

Please do let us know the result of your colonoscopy and how you get on with your rheumatologist's appointment.

 

Kind regards,


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#9 miocean

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Posted 07 April 2013 - 05:43 PM

Tiffany,
I know a young girl who has POTS and it has restricted her life so much. I am sorry you have to deal with that and that you also lost your baby. Scleroderma is a difficult to diagnose disease and is based on symptoms more than the actual test numbers for diagnosis.

There's a part of me that wants to tell you not to ask for more than what you've already got but I also know how frustrating it is to feel so badly and not be getting solutions.

Best wishes,
miocean
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#10 POTScared

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Posted 18 April 2013 - 10:05 AM

I think I have sclerederma NOT SLE- need help- will speak with doctor next week but that's a long wait!

 

I do not have skin issues, the only thing I have is malabsorption for an unknown reason in my bowel. I have P.O.T.S (postural orthostatic tachycardia syndrome) which can cause motility issues but by looking at the labs shouldn't she be saying I have scleroderma NOT SLE? So confused. and if I do have scleroderma and its affecting my bowels and I'm not absorbing food can I live!?! I just had a chest xray and CT of abdomen and pelvis and blood work for my kidneys all normal. I have lost 24 lbs since November after a premature birth of baby.

 

Hi- the doctor told me last night that I have SLE, which I have symptoms that follow

- ache and pains (flu like symptoms); joints ache on occasion (wrist, back , hips)

- feel just plain flu-ish with fatigue swollen glands and a swollen lymphnode in my neck

 

I had an ANA 1:160 speckled - but the rest of the labs don't make sense

Neutrophil cytoplasmic AB IgG was <1:20

my SSA (ro) )ENA AB igG was 8 then it has a f up high with a 1

my SSB (La) (ENA) AB, IgG was 0

my Ribonucleic Protein (ENA), IgG was 0

Smith (ENA) AB igG was 0

Scleroderma (SCL-70) ENA AB was 3

 

Now according to the lab results it states the in order for the SSA or the SCL-70 to be positive it has to be more than 29.

Also the SSA (ro) ENA says if that's high its seen in Sjogren syndrome,SLE, and progressive systemic sclerosis.

 

And the SLE-70 (ENA) says scleroderma antibody is seen in patients with scleroderma and is considered diagnostic and specific to scleroderma if it is the only ENA antibody present. Next sentence SCL-70 is also seen in approximately 25% of progressive systemic sclerosis.

 

So even if my titers were High wouldn't I have progressive systemic Sclerosis not Lupus? Why is she saying Lupus? Personally I don not want to have Progressive Sclerederma but it seems here quite possible.

 

I need help, the doctor won't call me back.



#11 Shelley Ensz

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Posted 18 April 2013 - 12:04 PM

Hi POTScared,

 

First of all, I'm very sorry that you are sick, that you have just been diagnosed with lupus, and that you are concerned about your diagnosis and that the doctor is unavailable right now. I'll try to explain this in a way so you can understand, however keep in mind that you may be feeling upset right now and when we are upset, it is sometimes hard for us to make sense out of things because our mind is just whirring too fast. So you may want to take a break to do something relaxing and then come back to this later.

 

As it happens, scleroderma is only diagnosed based upon symptoms and not by lab tests, because lab tests can be misleading and they can be false-positive and even false-negative.  So actually that lab report is a bit incorrect in that a person does not automatically have scleroderma if they have a positive SCL-70 but no specific scleroderma symptoms. It is my understanding that if a person has a High (positive) test they might be prone to developing scleroderma, but a bona fide diagnosis of scleroderma requires certain symptoms.

 

Also, it is common for even entirely healthy people to have low levels of all sorts of antibodies so levels that are not "high" or "positive" are Negative.  Period. So if you have a "3" on the SCL-70 but positive is anything greater than 29, it means that you are negative for the SCL-70.  You aren't "a little bit positive", you are negative -- on this particular test, at this particular time, at that particular lab, given their particular measures and standards. 

 

Please note, that is not the same as saying you don't have scleroderma because if you did have symptoms exclusive to or very indicative of scleroderma, then you would (or should) be diagnosed regardless of what any of your labs are.

 

Now, please keep in mind here that I may be wrong -- I often am! -- and that I have not even sent in my five bucks for my Internet Medical Degree (IMD) yet-- but to my rather lame reasoning, if you are trying to cut the deck of cards in favor of a scleroderma diagnosis, based only on malabsorption, there is a logic gap, because weight loss can be caused by a zillion conditions, including POTS, which you already have, and weight changes are also to be expected following pregnancy (due to hormonal changes) and especially along with stress, which you have had more than your fair share of in the past year.  If you take all three together, POTS plus hormonal changes plus massive stress, you almost have a recipe for guaranteed weight changes, and there is hardly even any wriggle room to add yet another reason for weight changes to the diagnostic mix.

 

Then, of all the possible reasons in the whole world for weight loss, scleroderma would have to be near the very bottom of an extremely long list, because scleroderma is so much more rare than hardly anything else.  You would probably have better odds of being struck by lightening on a clear day while standing on the corner of Hollywood and Vine from 11:05 to 11:06 on a Tuesday morning. Worst of all, the mere thinking that it could possibly be an often fatal disease that is causing your weight loss, would be more than enough for most of us to lose our appetite.

 

And, all this might be causing you to lose sight of the fact that you should be dealing with real-world issues such as working with your doctor to establish the best possible health practices to keep your POTS, and your new diagnosis of Lupus, under control.

 

No matter what is causing your weight loss (even if it is, on the very off chance, due to scleroderma), the only remedy for it is probably going to be to increase your food intake to compensate for it, and to reduce your stress levels because stress can worsen any g.i. issue.

 

If you get down to dangerously below normal weight, then they will either send you for treatment for anorexia and/or they will begin tubal feeding. One of our members here has scleroderma and has been on tubal feeding for years, and yet she still runs a very lively home complete with geese, and even produces a radio program about cooking and recipes. I have another friend who is a grandmother with scleroderma, and she works full time and has been on tubal feeding for probably about ten years now.

 

So what could be the worst possible thing that could happen to you?  You could have scleroderma and be on tubal feeding and then perhaps have mandatory geese or host a radio program? 

 

My point is, you would live and you would probably even learn how to live happily. Once you can see your way clear through to that, you can probably gain enough perspective to summon the fortitude to get you over and through this very bumpy road on life's path for you. Meanwhile, we are all rooting for you and you don't "have to" have scleroderma to be a member of this forum, giving and receiving support.

 

:emoticons-group-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.

#12 POTScared

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Posted 18 April 2013 - 02:00 PM

Could there be other reasons for Malabsorption other than Scleroderma?

 

I just don't understand how I get a SCL-70 test of 3 (negative is 29) if I don't have it.



#13 Shelley Ensz

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Posted 18 April 2013 - 06:09 PM

Hi POTScared,

 

As I mentioned before, I may be wrong -- I often am! -- so please correct me if you (or anyone else) finds otherwise.  But it's my understanding that with the test results, such as SCL-70, when they list 0-29 as being the range, they mean that anything from 0-29 is normal (Negative) and anything above 29 is High (or Positive). 

 

Test results vary by laboratory and the exact type of test they run, which can create a lot of confusion if you look at other online discussions. And for this very reason -- the variances in tests and how results are reported -- my understanding of your test and test results could be wrong, as well.

 

And yes, there are lots of Causes of Malabsorption and I think it may even be rather rare for them to list scleroderma as a possible cause.  Follow that link for a starter list, which includes AIDS, celiac disease, many medications (including some antacids), cancer, some surgeries, liver problems, parasites, and intolerance to foods, especially cow's milk and soy. 

 

All of those things are much more common (and thus statistically more likely) than scleroderma; and malabsorption due to scleroderma would more typically be a late-stage problem in the disease than an early-stage problem.

 

Please don't overlook or dismiss the idea of food sensitivities being a problem.  Sensitivities can arise at any age so even if, for example, you've never had a problem with milk, it could be that your body may not be able to tolerate it anymore. Suspect any food that you crave or that you seem to eat a lot of, because for some dumb odd reason, we tend to crave the foods that we are least likely to tolerate.

 

 

:emoticons-group-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.