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11/06/2009 04:44 PM

Do I have Scleroderma

Jamienbv
Posts: 10
New Member

First of all I am 1 23 year old-female and for a while now I have a lot of problems medically. I have had gall bladder diease where they found that my liver didn't look normal and they had to do a biopsy but all they could tell me was that it was not cancer. I was diagnosed with R. Artheritis my freshman year in high school but was retested recently and don't have it. I tested borderline for lupus but have been constantly retested and everything has been negative. I have had high liver enzymes, heart issues, kidney issues, digestive issues, I have what appears to be a rash with bumps on my face and upper arms. I have rough skin patches on my elbows, knees and ankles, I do have thick skin all over my body- not rough skin, but very thick skin. Most people can pinch their skin and pull it up.. you cant even pinch me or get a chunk of skin and if you try its very painful. Everytime I go to have blood drawn they say that my veins are small but honestly I think my skin could make the veins feel small.. I have had phlebitis in the past several times.. im tired all of the time but cant sleep, I itch all of the time. My body aches all of the time. Sometimes it is difficult for me to move. etc. etc. Two years ago I tested positive for scleroderma through blood work.. but the dermotologist said that it was only by a few points, and that it didnt look like I had it but I would need to be retested in a month and if I tested positive again then I have it. But i was never tested again because my skin biopsy came back inconclusive and so he said I most likely did not have the disease, and to be honest I had to have surgery on my elbow because I had cubital tunnel in my left arm.. and so I sort of forgot all about it.. as far as nerve issues go.. I also have it in my right arm and I even have sciatica. From research I am assuming I would have diffuse scleroderma if I had it but wanted advice and opinions. Obviously I should be retested but I wanted to know if it was possible to test positive only by a few points and still have it I guess??? Please help

Post edited by: Jamienbv, at: 11/06/2009 04:46 PM

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11/07/2009 04:33 AM
DaisyDo
 
Posts: 417
Member

Jamienbv,

First of all, welcome to the group. I hope you will stick around, and keep us company.

Yes I know it's possible for the blood tests such as SCL-70 and anticentromere to even be totally negative and still have scleroderma. In diagnosing it they go by the body effects, not by the blood serology. So the fact that it was low certainly does

    not
mean you don't have it. In fact if the SCL-70 is elevated at all, this test is considered very specific for scleroderma. Was it the SCL-70 that was positive? Or the anticentromere test?

And you say your skin biopsy was inconclusive. You did not say it was negative. I suspect it needs to be repeated. Maybe choose a different lab (or different doctor) to do it this time.

You certainly do have a lot of stuff going on that can go along with scleroderma, and so I would be highly suspicious that you may have it.

Have you yet developed color changes in your hands or feet with cold (Raynaud's). Are you having any gastric reflux, heartburn, or the sensation that food lingers in the lower esophagus? Are you having any coughing, or huffing and puffing with exertion?

With that mild positive blood test, I certainly think you need a second opinion, preferably by a scleroderma specialist. The list of scleroderma specialists for your location can be found at http://www.sctc-online.org/institut.htm . If you are not in the U.S.A. there are also doctors listed at http://www.eustar.org ./index.php?module=ContentExpress&func=display&ceid=43& bid=19&btitle=eustar&meid=40 . Let us know how it goes.


11/09/2009 11:50 PM
sdr1029
Posts: 1
New Member

Jaimienbv,

Hi!! Were you ever tested for Primary Biliary Cirrhosis. The main symptoms are fatigue and itching, but there are many others and they vary from person to person. The liver function tests become elevated and usually alkaline phosphatase is the most effected. Visit PBCers.org and learn more about it. PBC is diagnosed through lab tests such as the LFTs and AMA and sometimes confirmed by liver biopsy. It is a rare autoimmune liver disease and it can be difficult to find gastroenterologists who know much about it. They are some suggestions on the PBCers website.

God Bless!!


11/10/2009 02:00 AM
DaisyDo
 
Posts: 417
Member

SDR1029, Welcome to the group! And thanks for that information. I have the anticentromere antibodies which are known to cause biliary cirrhosis via portal hypertension. My liver function tests have all been normal, but in 2007 a PET scan revealed the liver was very inflamed, despite not having any tumors. So I suspect the anticentromere antibodies are doing their thing. I am going to be checked soon for pulmonary arterial hypertension by a cardioechogram. I've also read that similar technology can also be used to check for portal hypertension (in the artery leading to the liver.) I don't know though whether it can be done by the same instrument used for the cardioechogram.

Anyway thanks for the link, and I have been reading it. In addition to the liver inflammation showing on pet scan I also have these things that can signal a liver problem:

itching (as you say)

occasional ankle swelling

palmar and plantar redness (palmar surface of the hands, and soles of the feet)

night sweats

easy bruising

osteoporosis

insomnia

I also have these things which your site says can go along with PBC:

thyroid problem (Hashimoto's), Dry eye, arthritic pain (and yes my legs are tender to slight touch), swelling of fingers,lack of libido, and a feeling of pressure in the liver area (feels like my bra is too tight, even when I'm not wearing one). And I am having to take vitamin D because of a blood deficiency of it.


11/12/2009 11:21 AM
Jamienbv
Posts: 10
New Member

Well here is a little bit of an update. I just called the doctor to find out whether it was the SCL-70 Test or the Antibody test that I tested positive for. SO I guess according to the lady I spoke with on the phone, they are mailing me the test so I should have it in a day or so. I do plan on getting a second opinion I will use the links given to help me find a specialist in this area. And yes my skin biopsy did come back inconclusive not negative.

Now about the PBC thing- I figured I either have Scleroderma or PBC- and let me tell you why- I had looked up something online either Scleroderma or some of my results on my blood work which ultimately lead me to the name- when I saw the name and the word biliary I had to click on it because of the problems I have had with my gall bladder. NOt only did I have gallstones but I later had sphincter of oddi dysfunction. But when they went in to remove the gall bladder the surgeon said I had some sort of weird growth on my liver- he described them as some sort of cells and as a result did a biopsy, all he could tell me when the results came back was tha it was not cancer, said maybe they were fatty cells or something and didnt tell me to follow up with anyone on that issue. So I clicked on it only to find out that PBC is associated with Scleroderma, R.A and Lupus. Well Freshman year in high school I tested Borderline for Lupus but when restested it came back negative time and time again but the same year I tested borderline for lupus I was diagnosed with R.A by Shriners Hospital but was recently retested and it was negative. Then last year I tested positive for Scleroderma all related to PBC.

To be more specific on my symptoms:

I have a high heart rate

My Weight Fluxuates all of the time

Constant Kidney Infections and Kidney Stones

I do have acid reflux once in a while

I do have heart burn sometimes

My heart skips a baet once in a while

I have severe insomnia

and Skin itching but mainly at night when I lay down for some reason

I have joint pain sometimes swelling in ankles hands wrists knees especially

I get migraines a lot

Sometimes a strong appetite or a weak one

I do have pain in my liver area but always thought it was scar tissue have had high liver enzymes in the past and abnormal thyroid tests on occasion

I do believe I have a mild form raynauds or mine is just a ltitle different I have seen many photos od the phenomenon and can Identify with some of those photos

I do have skin tightness all over my body and thick skin but nothing like the photos I have seen- its just when you go to grab a chunk of skin you cant or if you try to lift my skin up you cant do that either

I do have bowel problems I am either really constipated or have xtreme diarrea sometimes I can even have constipated diarrea or where it starts off with really hard stool but seconds later turns into diarrea and its painful sometimes so painful that it makes me vomit and sometimes chest pain makes me vomit or I can vomit out of no where for no reason

I do have nerve problems, cubital tunnel, sciatica and some other nerve issue I dont remember the name of but it involves my thumb

I do have fluid retention sometimes- one day I lost three pounds no joke and that was recently.

I have really bad eye sight, I was born that way but I had surgery to help it a little and the last time I was at the eye doctor he was shocked because I guess my eyes are doing something it is extremely rare to do with the surgery I had and with my condition- dont remember what exactly they were doign but I know they had gotten worse

Sometimes when its cold my hands and feet will go numb and as I mentioned my whole body does swell I have had female problems that are unrelated to these symptoms

and I know this is probably a weird or stupid question but does anyone have issues with piercings not closing? my ears never closed my belly button isnt closing and I havent worn anything in them in- gosh I dont even know how long. Its just everyone I know- all of theirs closed up no problem and quite quickly

I do have a butterfly rash on my face but can conseale it with makeup but have the same rash on my upper arms that one I cant hide cuz the makeup would get all over my cloths

Constantly tired all of the time I have my good days and bad

for now thats all of the stuff I can think of off the top of my head it looks like I can add photos to these posts so maybe I shuld take photos so you can better see what I am talking about?


11/12/2009 02:13 PM
DaisyDo
 
Posts: 417
Member

You certainly sound a lot like me, so I am glad you will find a specialist to check you out. Just please persuade him to do an anticentromere B test separate from the ANA. After about 20 postitive ANA tests in a row, I had my first negative one the very same day as the "off-the-chart" high anticentromere B test. The ANA test should have been positive showing an anticentromere staining pattern, but it didn't. Obviously it was a false-negative. Now I've had two highly, highly positive anticentromere B tests, and yet historically only one of those many positive ANA tests showed an anticentromere pattern. So I don't think the ANA is good at picking up this particular antibody. And the ENA test they usually do following a positive ANA does NOT include the anticentromere B test either. It has to be ordered separately, which is why it took about 12 years for a doctor to finally order it for me! And it was ordered only after my doctor witnessed an attack of Raynaud's right there in his office! And even then I had to ask him to please order the test.

11/12/2009 03:07 PM
Jamienbv
Posts: 10
New Member

Thank you for the suggestion I wrote the name of the test down which will be very super helpful thank you so much. I will let you know what I find out when the positive test comes in then what i find out about the specialist! You guys are so awesome thank you so much for all your help and support!

11/13/2009 02:47 PM
Jamienbv
Posts: 10
New Member

Update: Got my bloodwork in the mail today. I did test positive for Scleroderma last year. However, I tested postive by one point. There are a couple other things circled on my bloodwork that came back low which was my bilirubin and my Basic Metabolic stuff- now these things always come back low on repeated blood work that I have had in the past.. I am starting to collect my blood work because doctors have told me that everything is in my head, but my blood work says something different. Repeatidly. My blood work also in the past has indicated that I might be anemic but with a specific type of anemia that would fall under primary biliary chirosis but I have never been tested for it.. I can see why doctors would dismiss it though because everything that comes back off on my blood work is only off by just a couple of points but its the same tests that keep coming back off and I dont think they pay any attention to it.. so I have reason at this point to probably be tested for both PBC and Scleroderma so it is time to find a new doctor now since I no longer live in the area where my old one is located.. which is good because I don't think I liked him much anyway.. But at least we now know that it was the SCL-70 test. Smile

11/13/2009 03:26 PM
Jamienbv
Posts: 10
New Member

Are the symptoms pretty much the same for PBC as they are for Scleroderma?

11/13/2009 03:27 PM
DaisyDo
 
Posts: 417
Member

Jamienbv,

I've read that low levels of bilirubin are not usually cause for concern, but may be caused by taking vitamin C (ascorbic acid), phenobarbital, and theophylline (Elixophyllin).

However, I would not agree with it being of no significance. Another study showed that patients suffering from Seasonal Affective Disorder (SAD) ran lower levels of Bilirubin. Light box treatment significantly increased the level of blood bilirubin.

And according to the study at http://www.ncbi.nlm.nih.gov/pubmed/19296952 there is also an association between atherosclerosis and low bilirubin, causing increases in coronary artery disease.

So maybe just getting enough sun can BOTH combat SADS AND slow down atherosclerosis and its risk of heart attack! Are you getting enough sunshine?!!!!

I tend to run abnormally low bilirubin and I KNOW I don't get enough sun! I hate going out because my Raynaud's makes me very intolerant to temperature changes. I guess I should get a light box. My Dad was the same, and he had his first massive heart attack at age 58.

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