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#1 msjess

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Posted 30 June 2014 - 03:23 PM

Hey everyone, I haven't posted in a while but I have a few things I am looking to get advice on. I am currently still without a diagnosis. I can't seem to find out if my rheumy even ran the centromere antibodies on me again... the only paperwork I see from his office says they were canceled with no reason given. I have a ton of things going on, right shoulder pain, right upper quadrant pain that is sharp at times and takes my breath, and it feels like I have to pee constantly. And I mean constantly! Oh, and it hurts to pee.

 

So, right now I am scheduled for MRI for my shoulder, which orthopedic doctor believes to be due to impingement.

 

I had a recent ultrasound of my liver that shows "increased echotexture that may be from fatty infiltration or fibrosis." GI just says I need to lose weight. :/

 

Meanwhile rheumy is extremely nice but really doesn't seem to be able to "put the pieces together" and figure me out. All he wants to do is run ANA tests, SED and CRP tests and since I am pretty normal (aside from elevated ANA) he shrugs it off and says to come back in six months. I am continuing to have hand swelling and pain, although the burning pain is pretty rare for me now, and my feet also hurt off and on similar to last summer. I have widespread muscle/joint pains that seem to come and go as they please but really make sleeping a challenge. I also have had cardiac testing done for palpatations and chest pains but nothing has really come of it.

 

I have a couple of questions for you all. First, do you think that my pains in my liver area may be related to this increased echotexture of the liver and would you request a biopsy for autoimmune hepatitis if you were in my shoes? Also, do you know if non-alcoholic fatty liver is associated with scleroderma at all? I seem to remember something about the liver and fibrosis... actually fibrosis in any organ, right?

 

Another thing, is this constant need to pee related possibly to scleroderma? Is this what IC feels like? It has been ongoing for more than a year, and when I went in for an ultrasound of my uterus over a year ago the tech told me that I hadn't emptied my bladder, although I had pee'd just before going in per their request... so I am retaining urine. Does it get more painful? And can it cause pain in the abdomen?

 

Last, how do you deal with rheumy who is extremely nice but doesn't seem to get it that I want to find out what is going on with me? And now? How do you deal with this politely? I have no other alternative rheumy in the whole state who will see me. The first one I saw said I had drug-induced lupus, but never followed up, and the second one set up an appointment time for me but then refused to see me. And going out of state isn't an option now, because I am on state Medicaid.

 

I am sure there is other stuff I have forgotten to ask but this is what I can think now, so tired.

 

Thanks, Jess

 



#2 Shelley Ensz

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Posted 01 July 2014 - 07:16 PM

Hi Jess,

 

I'm not sure what's going on with your particular doctor and case, of course. But my doctors have only very seldom run antibody tests, because they simply aren't anywhere near as important as the actual symptoms -- both for diagnosis, and for treatment.  Since scleroderma can't be diagnosed without so many symptoms, or certain symptoms such as tight skin or pulmonary fibrosis, and if antibody testing isn't going to change the treatment plan in any way, then its a matter of not wasting time and money. Oddly enough, you're in a situation where even specific positive antibodies wouldn't really help you (I think, I assume, excuse me if I'm wrong!) because diagnosis would still be evaded as it relies on a certain constellation of symptoms.

 

Also, you don't know for sure whether your doctor has other ideas regarding your diagnosis in the back of their head. They might already be convinced that you are, for example, a UCTD patient, and only half of those EVER go on to be diagnosed with anything more firm than that.  Ever!  It doesn't mean they are not sick or suffering.  Many of us were plopped into the UCTD category, often for years, some for decades, before ever having a conclusive diagnosis of scleroderma.  Lupus and sarcoidosis are other similar illnesses.  Plus, some people develop a whole host of mostly aging or lifestyle-related difficulties and deterioration, without any cohesive underlying disease process causing all the mayem.

 

Rheumatologists are very accustomed to following patients for years, sometimes decades, waiting for symptoms to add up to something. I've even heard of a few people followed for decades, even treated from time to time for rheumatic problems, who were eventually found to not have any rheumatic disease at all. This might be because our bodies are sometimes just as good at healing as they are at breaking down, all on their own, without any treatment.

 

About a liver biopsy (See Scleroderma Liver Involvement), personally I am always trying to weasel out of all sorts of tests and certainly anything invasive. One of my huge sales pitches to doctors is, will this change my current treatment plan in any way?  Would it matter if I skipped for six months or a year or two, in the big scheme of things?  Things would have to be mighty serious before I'd let anyone have another piece of any of my internal organs.  Why, I even object to the thought of too much radiation!  So I am not the one to rely on for this. Share your concern with your hepatologist and be sure to ask and study *all* the risks -- and most importantly, potential benefit to your treatment plan -- before proceeding.  Also, I don't recall anyone ever being diagnosed with scleroderma via liver biopsy. We'll have to set Jo loose to look up research articles about that.  I will be so embarrassed if we already have them on our main site; if so, it has gone right over my head! :emoticon-dont-know:

 

That's a good question about bladder problems. As it happens, there is a huge difference between ordinary urinary urgency and interstitial cystitis. The urgency is around the clock (day and night), often 20 or more times per day, and usually accompanied by severe bladder spasms, the sort that can sometimes even double a person over.  It drives patients straight to the doctor, usually with a pitstop at urology too, certain of a bladder or kidney infection. But time and time again, they test negative for infection. 

 

Eventually more extensive tests are done (during surgery) and they are found to have Hunner ulcers, petecchial hemmorhages, and a very small bladder capacity. Urgency is certainly one of the symptoms, but that occurs in other situations as well. See your doctor, and possibly a urologist too, to make sure you don't have an infection and to figure out how to get things back to normal.  Also, if you are on diuretics, perhaps for high blood pressure, that would definitely be a probable cause.

 

But, more importantly from a diagnosis-of-scleroderma standpoint, although many of us around here also have interstitial cystitis (both me and Amanda come to mind), it's one of those loosely connected ailments.  It usually occurs by itself. It can occur with other illnesses, scleroderma being just one of them.  So even a firm diagnosis of IC does absolutely nothing to make or even improve the odds of a diagnosis of scleroderma.

 

Is it time for me to mention yet that I am not a doctor and have NO medical training at all?  Yes, I think it is!  I know what it's like to wonder what's up with health, what should be done about things, trying to figure out what's important, what's not, what to try next to get healthier.  I wish I had more answers for you, but all I can say is patience, patience, patience. Whatever is true will always be true and eventually the truth shows itself.  So hang in there, okay?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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 Joelf

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Posted 02 July 2014 - 01:30 AM

Hi Jess,

 

I'm sorry to hear that you've still been having ongoing problems and have not been able to get any nearer to a diagnosis, despite the assortment of tests you've had.

 

Well now, I've had a hunt around for research articles about being diagnosed with scleroderma via liver biopsy, but I'm afraid I've drawn a blank. We do have this article "The enhanced liver fibrosis (ELF) test: a clinical grade, validated serum test, biomarker of overall fibrosis in systemic sclerosis (SSc)  .

 

However, I have found some interesting articles regarding Autoimmune Liver Diseases, Stepwise combination of Simple Noninvasive Fibrosis scoring systems increases diagnostic accuracy in Nonalcoholic Fatty Liver Disease and also Cytokeratin18 as a marker for non invasive diagnosis which although not exactly answering your questions, should provide you with a little light reading on the subject of liver disease!

 

Kind regards,


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#4 judyt

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Posted 02 July 2014 - 02:10 PM

Hi Jess,

 

Here I am with my Liver Disease Hat on.    The answer to your question about liver disease being associated with Scleroderma is that I don't know but what I do know that it is not that unusual to have both.   As with many other autoimmune disorders, they often occur together.   There is a bit of a list as far as I know:  PBC, PSC, AIH and NAFLD but as far as I am concerned and the people I know with one or other of these conditions, pain is not really an issue.   I would never have known (and still wouldn't) that anything was wrong with my liver if it hadn't been that my Liver Function Tests have been deranged for years and now on CT it can be seen that I have some cirrhosis.

 

The only definite side symptom that I have read about from the experience of others is some jaundice and an itch.   Apparently the itch is inclined to come on at night and drive people silly.   For some it is their only symptom and for others there is nothing.   Of course we have to accept that everybody has some fatigue with all of these things, and many have joint pain.   Further down the track as the cirrhosis becomes more widespread then other side effects come into play but I am sure none of these are an issue for you.

 

A close friend who has severe Sjogren Syndrome also developed NAFLD (non -alcoholic fatty liver disease) and dealt with that by diet.   She now knows that she has a tendency to it and watches her diet carefully.

 

Best wishes in your quest.

Judyt



#5 Kamlesh

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Posted 03 July 2014 - 12:35 PM

Hi Jess,

 

Scleroderma is not only very difficult to diagnose, but also to treat. Many times it takes many years before diagnosing conclusively Scleroderma.

 

Due to have any where thickening skin or shining skin, this is normally associated with scleroderma. I believe there is no test which can conclusively diagnose Scleroderma for each test, there are large number of exceptions.

 

Please take care of yourself.


Kind regards,

Kamlesh


#6 Amanda Thorpe

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Posted 08 July 2014 - 05:40 AM

Hello Jess

 

 Have a look at our video listing those symptoms Shelley has mentioned and I concur blood work is only a minor player, they help confirm/deny scleroderma in conjunction with symptoms and history which are far more important. I have diffuse scleroderma but have negative blood work and always have, even when I was seriously ill (as in getting ready to check out) in 2010.

 

I appreciate how difficult it is to have a collection of symptoms and no specific diagnosis to pin them on. When diagnosed it was terrible but the no diagnosis would have been worse. Have a look at our video difficult diagnosis which acknowledges that lack of diagnosis can impact on self esteem.

 

Take care and remember, you qualify to be here!


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#7 Amanda Thorpe

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Posted 08 July 2014 - 06:09 AM

PS: Jess, I forgot to say, I have IC and you would know if you were having it, not that you would know you had IC but you would know something was terribly wrong. When IC is in flare it obscures everything else, although I found the pain to be bearable (history of migraine, sciatica, IBS so no stranger to pain unfortunately) the need to pee was not. When in flare even a teaspoon of urine can inflame the bladder and cause that need to pee which as Shelley said can be 20 times in 24 hours, breaking it down further that can be every 15 minutes. Not that emptying the bladder actually brings any relief, well for a few minutes at a time I guess. Trust me you would know...even if doctors don't...took me 19 years to get a diagnosis.

 

Take care.


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#8 Shelley Ensz

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Posted 14 July 2014 - 11:14 AM

Hi Jess,

 

Have you had the MRI on your shoulder yet?  If so, how did that go?

 

Also, I found a link specifically for Liver Pain, which may or may not be helpful in your research.  Have you figured out what to do (or not do) about your liver yet?  I'm sending good wishes your way.

 

: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.

#9 LMarra

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Posted 29 July 2014 - 09:36 AM

I have had a Ana blood test that came back 1:160 with centromere pattern. In 2011 I also had a positive Ana test that was dismissed as a false positive and that was 1:80.
I am uneducated but have a question. I do not have any of the 5 symptoms of Crest Syndrome that is what this pattern points too. Does this mean I have another false positive. Everything I have read said you need to have more than just a positive titer blood test. One thing I do have once in a while is my fingers feel like I have a touch of arthritis, but it is not all the time and not daily. I do not have any disclosing of fingers or toes, or skin issues that I see.

 

Any ideas on why my blood indicates this? I am going to rheumatologists, but can't get apps till end of August and I am worried sick. Oh, btw I a vitamin D deficient and have taken D2 at 50,0000 IU and it did not help. They just started me on 50,0000 IU once a week of the D3.

 

Thanks for any reply or thoughts...wondering if this happened to anyone else and it was false positive.



#10 Shelley Ensz

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Posted 29 July 2014 - 08:17 PM

Hi LMarra,

 

Welcome to Sclero Forums. As it happens, false positives are very common with anticentromere antibodies. See Positive Predictive Value of Anti-Centromere and Anti-Scl-70 Antibody Multiplex Assays in a Rheumatology Practice Setting. "Of the 26 patients who were positive for anti-centromere antibodies, 8 patients had a diagnosis of CREST syndrome (30.7%). Additionally, 7 had liver disease, 2 had Raynaud's phenomenon in the absence of other CTD manifestations, 1 had an SLE, and 1 RA."  This means that 18 out of 26 people were diagnosed with something, but only 8 of those had CREST (limited scleroderma).  And 8 of those 26 were healthy (without even having Raynaud's.)

 

That's a big reason why the most important thing is your symptoms, when it comes to scleroderma. One question would be, if you aren't having any symptoms, then why did you have an ANA panel run? I'd be more concerned with WHY the test was ordered in the first place.  And in the absence of any discernible symptoms (at least according to what little info is in your initial post), then my question would be, why are you worried sick?  Is it only because of concern (and possible misinformation) about antibodies?  Or, is it just plain nerve-wracking to be going to the doctor for any reason at all (many of us would be with you on that score!).

 

Unfortunately vitamin D deficiency is so widespread, that estimates are up to 75% of Americans are now deficient.  Part of that is due to increased awareness of skin cancer, the result being that sunscreen and protective clothing and indoor lifestyles prevent absorption of Vitamin D,  With adequate supplementation, your levels will eventually go up.

 

My guess is that you'll probably be very relieved to hear that false-positives are common with anticentromere.  In many areas, it can takes months, sometimes six months or more, to get in to see a rheumatologist for the first time. So August is very quick, although I know it feels like light-years away when we are worried.  If you do develop any symptoms in the meantime, you can always see your primary doctor.

 

In short, I may be wrong -- I often am! -- and please keep in mind that I have no medical training at all.  Worry in itself has many symptoms and a very bad effect on health. I hope this info helps you cope a little better with the uncertainty, while waiting for your appointment.

 

: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.

#11 Joelf

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Posted 30 July 2014 - 01:15 AM

Hi LMarra,

 

Welcome to these forums!

 

I can't really add to the excellent advice Shelley has given you, except to reiterate that having positive antibodies for Scleroderma (or any other autoimmune disease for that matter) doesn't necessarily mean that you will go on to develop the full blown disease; many of our members have found that this applies to them and also the reverse can be true (negative blood tests and yet all the symptoms confirm Scleroderma).

 

Please let us know how you get on with your rheumatologist appointments in August.

 

Kind regards,


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#12 Amanda Thorpe

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Posted 30 July 2014 - 12:47 PM

Hello LMarra

 

Welcome to the forums! You'll be pleased to know that many people have come and gone with exactly the same question, do positive blood tests alone merit a diagnosis of scleroderma? No.

 

Some people have positive antibodies but no symptoms and never develop any symptoms, some people have plenty of scleroderma symptoms having scleroderma but no antibodies so antibodies alone are a red herring.

 

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

 

Let us know what the rheumatologist says and what instigated the antibody testing?

 

Take care.


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