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Biomarker for Diffuse Scleroderma skin has been discovered!


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Rheumatologist visit - None the wiser!


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#1 TOB

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Posted 22 March 2009 - 03:16 PM

Hi all,

I just though that I would let you know how I got on at my first appointment with the Rheumatologist last week.

Well to put it bluntly he was hopeless and I am none the wiser! The consultant skimmed through my blood results (ANA positive Speckled Titre 640, Positive SSO RO60, RF higher than normal, Low Positive Cardiolipins) and just 'ummed and arrr'd' and didn't explain anything. He examined my skin and said there is no evidence of scleroderma as I have no skin manifestations. He then briefly examined me and listened to my heart and told me that I have a 'slight heart murmur' When I questioned whether that is the reason I have palpitations and shortness of breath he said, 'it could be but I often see this problem in slim people as you can hear the heart much clearer!'. He then got me to move arms and legs to see if there was any stiffness. I told him that I get carpal tunnel in both wrists and on waking I am quite stiff. He told me that I needed to exercise more and look at my posture. I work out 3 -4 times a week so am not sure what else I can do! He then mentioned that there could be a possibility of 'mixed connective tissue disease' but then in another breath he told me that he doesn't think I have anything and 'not to worry'. He then asked me if I suffer from dry eyes and mouth which I told him I don't. He then said that 'well you will probably get it in the future'! He mentioned Sjogrens but didn't actually say he thought I had it!!!! I don't really have any symptoms of Sjogrens other than Raynaud's and gastro reflux.

I then questioned why my ANA test had a titre of 640. He said he wouldn't worry unless it was 'off the scale and up in the 200's'. He told me to imagine in the blood lab when the guys there are testing the bloods in the rows of test tubes (he sat there with his hand on his head doing the actions of adding the stuff to the test tubes) he then went on to say that quite often the guys in the labs add double to the test tubes as they lose concentration and that's possibly why my result came out higher!! You can imagine that I just wanted to cry and get out of the room as it wasn't worth asking any more questions. He also told me not to believe in everything you read on the net!

He asked me to make another appointment to come back at the end of May as it is winter here in Australia and he can then discuss ways of managing Raynaud's. Having said all that he has ordered some more ANA/urine/Anti CCp antibody tests which I was pleased about but I am very tempted to ask my general practitioner if I can get a second opinion.

Sorry to ramble on but I feel so frustrated. Of course I don't want to be diagnosed with anything but I just want to ensure that the test results are thoroughly investigated.

I would be interested to see what you think about my positive ANA at 640 and positive SSO R060 and if you think this is in the higher bracket. Can there be nothing wrong with me but still have that lever of titre?

Thanks for listening!

#2 Penny

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Posted 22 March 2009 - 05:08 PM

TOB,

I am so sorry that you went through all that. It sounds like a very frustrating visit and like the doctor was blowing off positive test results and definitely giving you mixed messages.

I think that you should ask for a second opinion, hopefully to a specialist who is familiar with Scleroderma and will listen to you.

Warm hugs. I am just so mad for you! To say that your high numbers are from the lab messing up, an assumption that would lead any patient to doubt any and all test results and wonder if they will ever get diagnosed!

I hope that things go better for you soon and think that getting a second opinion is in your best interest.

(((((hugs))))))
Penny

#3 Kamlesh

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Posted 22 March 2009 - 05:12 PM

Hi TOB,

I had same thing – ANA positive, Speckled Titre 640 for several years before I was diagnosed with Scleroderma. This disease makes such a huge impact on physical, mental, and emotional well being, I would not leave any stone unturned to get official diagnosis and if necessary go on very aggressive plan. It took doctors almost for years to diagnose the disease and in the mean time my lungs, esophagus, and digestive system were damaged.

Why are you waiting until May?
You need to find great rheumatologist who specializes in Scleroderma.
Kind regards,

Kamlesh


#4 TOB

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Posted 23 March 2009 - 12:40 AM

Thanks to all for your kind words.

In particular I wanted to ask Kamlesh whether you had SSA (RO60) positive or any other part of the ANA. I also have low positive cardiolipin tests and a positive (but not extremely high) Rheumatoid Factor.

My most troubling problem is the acid reflux I have had for 6 and half years. I am on 2 nexium 40mg tablets every day and it is now getting to the point I still and feeling the acid. The acid actually goes right into my ear canal so the right side of my head feels fuzzy (like when you have a head cold in your ears). The acid makes me choke, it is damaging my throat and more often than not now I am getting burning in my chest. The rheumatologist told me that it could be completely separate from Raynauds and nothing to do with a connective tissue disease. I still think that with my positive ANA and other positive results something must be going on.

It would be good to hear of any other symptoms you are suffering. For me it's also irritable bowls (diagnosed with IBS several years ago) shortness of breath, palpatations (rhemo mentioned he heard a slight heart murmur!) coughing on exertion. I also get a very tight feeling in my chest when I do cardio excercise. I am fairly fit am 161cm tall and weigh 50kg so weight is definitley causing the shortness of breath or palpatations!

Please excuse me for rampling but it is just good to get this off my chest and to see if I can find anyone else with similar results to me that has been diagnosed with sclero.

Many thanks,

TOB

#5 JANQ

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Posted 23 March 2009 - 01:54 AM

Hi TOB:

First of all, I am so sorry for this experience with your rheumatologist! It is so frustrating to have a doctor NOT listen! We know our own bodies, and we need to have doctors, of all people listen to us, look at the tests and not take anything lightly. To brush off your test results is completely unthinkable!! I am with Penny, it just makes me so mad to hear this!

All of your symptoms have such a familiar ring. I was diagnosed with Undifferentiated Connective Tissue Disease, not Sclero, in December, and have a positive ANA, positive dsDNA, acid reflux, dry coughing constantly and especially when lying down, heart palpitations, shortness of breath, chest pains, carpal tunnel, among other symptoms. Your rheumatologist actually should be the one searching the web if he thinks that these symptoms mean nothing!! Doesn't he realize that these diseases are especially confusing, which is the reason that he should be looking at the clinical presentations along with the labs to make a diagnosis?

I felt a little bit differently than you, in that I did want to get diagnosed, finally! I had many, many years of symptoms and had all of them brushed off by a previous doctor. Of course, no one wants a bad disease, but what I believe we all want are answers.

My heart goes out for you, please cry on our shoulders anytime. We carry plenty of tissues and will help you dry your tears!

Many, many warm hugs.

Janet

#6 Amanda Thorpe

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Posted 23 March 2009 - 04:18 AM

Hello TOB

When the rheumatologist began the mime act you should have said thanks for the entertainment can I now see a real doctor?

You need a sclero specialist because they are able to add one and one to make sclero whereas the rheumatologist you saw probably has difficultly tieing shoelaces. It appears that the rheumatologist did not want to make a diagnosis for some reason or answer your questions competently so that you could at least be informed.

If you can seek a second opinion from a sclero specialist. It is so frustrating when this happens but you have to pursue the matter, by your own advocate, it will pay off in the end.

Keep us informed and unfortunately we've all been there to some degree or another so we understand how helpless, angry and frustrated it can make you feel but you carry on regardless. :)

Take care.

Amanda
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#7 Jeannie McClelland

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Posted 23 March 2009 - 05:27 AM

Hi TOB,

Deary me, that rheumatologist sounds like the first one I saw. We went through much the same routine. It would have been funny except for the potential for serious consequences.

Have you looked at the Systemic Scleroderma Symptoms page? I'm not medically trained and definitely not offering a diagnosis or treatment plan, but it sounds to me like you need a really good 'work-up' by someone who specializes in autoimmune diseases such as scleroderma, MCTD, etc.

Antibodies can give you mixed impressions. There isn't a specific antibody/titer level that will give you a 100% certain diagnosis, but they are very useful indicators. My ANA was high 1:1280, as I recall, with a nucleolar pattern. The first rheumatologist I saw dismissed that as 'insignificant'. The great guy I see now called that 'impressive'.

There is a form of systemic sclerosis that doesn't present with skin thickening/tightness called 'systemic sclerosis sine scleroderma', which happens to be what I have.

It took a while for me to get diagnosed and how that happened was that I was able to go to a major center where they did PFT's, an 'exercise to maximum' test, chest CT and X-Rays, tons (OK, gallons of blood work), esophageal and larynx studies, 24-hr acid reflux study, bubble and regular echocardiograms, nuclear studies for lung diffusion and I forget what else.

So, my diagnosis was based on high ANA with nucleolar pattern, telangiectasias, capillary dropout on my fingers, observable Raynaud's, lung fibrosis, pulmonary hypertension, evidence of GI involvement, and a history of muscle and joint pain.

Once I hit the major center and they did the complete work-up described, diagnosis didn't take long - just 3 months from 1st appointment to getting the diagnosis. The rheumatologist I see has a particular interest in this form of scleroderma so once he saw all the other stuff that was going on, I guess the diagnosis was pretty much a given.

I'm rambling! The point of all this is: find another rheumatologist and start looking today! We have a listing for Scleroderma Specialists worldwide.

Good luck! Let us know how you get on, OK?
Jeannie McClelland
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#8 ozzy69

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Posted 23 March 2009 - 09:35 AM

TOB,

I have felt the same way before and it is frustrating to say the least. I went back and forth with doctors for years. They keep blaming fibromyalgia for all my problems. Finally I saw a rheumatologist who looked at my hands and feet and mentioned sclero. At that time my ANA was negative, but he did not like the way my hands and feet looked. He sent me to another rheumatologist three months later and I was diagnosed with Scleroderma in NOV 08. In three months my ANA went from negative to high positive 1:1280 with speckled nucleolar pattern. I also have reflux, telangiectasias ( happened a couple months ago), capillary dropout on my fingers, observable Raynaud's, IC of the bladder, skin thickening in face, hands and legs.

It hard when you feel like doctors are not listening to you. I have a dull ache, sometimes sharp burning pain under my right lower rib. It has been there for years but it is getting worse, so I made an appointment with the doctor again to try and figure out what is going on. I dread it because I know he is going to say he does not know, but I feel like it is time to push again.

I hope you do get another appointment with a doctor that you feel understands and listens to you..

Many hugs,
Nina Lynn

#9 TOB

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Posted 23 March 2009 - 11:12 PM

Thanks to you all for your feedback and kind words.

I went for my third lot of blood tests today which were anti-cardiolipin, ENA's and something else plus urine. I should get the results back on Friday or early next week so will keep you posted.

In the meantime I will be looking for a scleroderma specialist or connective tissue disease specialist in my area, I am definitely not going back to the one I just went to!

Regards,

TOB

#10 Shelley Ensz

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Posted 24 March 2009 - 01:00 AM

Hi TOB,

Well, you've now got me quite worried about all those guys hovering over test tubes and losing their concentration! Should we be glad they are not air traffic controllers or be concerned that our testing is routinely given such slipshod treatment? Huh.

In any event, I'm actually more worried that your rheumatologist is losing concentration and perhaps has had one too many drops of something put in their coffee. :blink:

Why don't you look over our list of scleroderma experts and see if you can find one who is sober, awake, and aware of scleroderma? :lol:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 JANQ

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Posted 24 March 2009 - 01:24 AM

Love it, Shelley!!! :lol:

You put into words what we all want to say on occasion, and sometimes more often than not!!

Warm hugs to all!

Janet

#12 purplelibrarian

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Posted 24 March 2009 - 05:04 AM

Why are doctors so insensitive sometimes? I wish you all the best. I am having a hard time finding a competent (conventional/MD) doctor myself.

#13 razz

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Posted 24 March 2009 - 07:51 AM

TOB,

I agree with everyone, you should get a second opinion and find a doctor who specializes in rheumatology not charades. This one sounds like he put his brain on pause and couldn't give a comprehensible explanation for your condition. You need a rheumatologist who specializes in scleroderma to examine you and order all the proper tests so you can begin a suitable treatment plan.

I lost count of how many doctors I fired :blink: before I hired the right one to treat me! If you feel better taking someone with you to your appointment to help you drill the doctor, don't hesitate. :)

Best wishes,
Razz
Live well, Laugh often, Love much

#14 debonair susie

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Posted 24 March 2009 - 09:16 AM

Hi TOB,

WOW! See why I totally love this Scleroderma Forum?!

Having read through your thread and everyone's posts, I have no idea what more I could add to the already great replies!

I only know that I empathize with what you have already experienced and will keep good thoughts in the hope that you have good fortune in connecting with the rheumatologist that is a perfect fit for you!

Please....Keep us posted, if you would?
Thank you for posting!
Special Hugs,

Susie Kraft
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#15 TOB

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Posted 06 April 2009 - 01:48 PM

Hi again,

I just telephoned my specialist as I have heard nothing back regarding my ENA
(extractable nuclear antigens) and cardiolipin results. The secretary said 'if there was anything wrong the doctor would have phoned you'. She did then start to check and said 'your ccp and urine are fine', then she paused and said, 'all look ok but I will just run them past the doctor and if there is anything I will call you back'. I have had no reply so far!

What bothers me is that at my last appointment my doctor just brushed aside my test results and the last ENA was postitive for SSA RO60 and Cardiolipin was 'Low Positive' for both tests. I have now made an appointment to see my general practitioner next week, she will have a copy of the results so I can go through them with her and then request to see another doctor for a second opinion.

I'll keep you posted!

#16 Wohali

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Posted 06 April 2009 - 05:41 PM

I have yet to meet a rheumatologist with an ounce of concern or compassion and not one has helped me. I'd advise you find a new one.

Meanwhile I also suggest you go to a cardiologist and get a full heart checkup complete with EKG, heart ultrasound and stress test. I had to take matters into my own hands because I had doctors telling me they heard a murmur yet would not check it out. So I finally found a cardiologist who would test me and yep he found a murmur and mild pulmonary hypertension. I'm now on a calcium channel blocker to help the palpitations and murmur and incidentally the same medication is used to treat Raynaud's so it makes me feel much better taking it.

#17 shennen0820

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Posted 07 April 2009 - 08:29 AM

I am having the same trouble finding a rheumatologist too! I have an appointment with another one in May. Hopefully this one knows something about sclero!
Shennen