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Blood tests and capillaroscopy


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#1 smanda

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Posted 12 June 2009 - 12:15 AM

Hi all ... I wonder if you can help me again with your experiences. I am a 40 year old female.

I posted a year or so ago ... basically 6 years ago my fingers swelled and burned (and subsequently peeled along with my toes) I had tingling etc and some other mild, suspect symptoms of autoimmune style disease. My immunology then was negative and things calmed down bar the odd rash, tingling and strange numb spots.

A year ago I developed Raynaud's on hands and feet after having another batch of different but tell-tale symptoms for 6 months - sore red face, cold all over, genital and oral ulcers, numb toe and burning fingers (particularly around cuticle area).

I returned to Rheumatologist who repeated (at three month interval) immunology profile .. again everything normal. I also had a capillaroscopy - normal. I was then told I had less than a 1 in 500 chance of developing a disease given negative capillaroscopy and ANA. Great!

Since then I have had problems with stomach and chest. My lung capacity is about 20% down on what it was. I have mild gastritis and slight laxity in stomach valve too (from endoscopy) which I understand is common in scleroderma. My voice goes sometimes (I can't raise voice without coughing) and I have a constant pressure in chest area through to back which I am thinking is a symptom of GERD, although I don't have indigestion as such.

What I wanted to ask, has anyone had a similar experience to me, ie, 6 years on and all negative tests. I really want to believe them but I kind of know that something isn't right - that this is too much of a coincidence. I would believe it is all in my head if I hadn't had the Raynaud's diagnosed. I had "parked" my symptoms simply into the fact that I probably had mild UCTD which was unlikely to evolve. However, I am concerned about the chest involvement. Breathing just not right.

Reading all your posts and responses I have found you all very inspirational and there is definitely a positive theme running through this forum which helped me to "park" my symptoms and stop worrying about it. However, I do probably need to see another Rheumatologist.

Any insight from anyone would be greatly appreciated.
smanda

#2 smac0719

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Posted 12 June 2009 - 09:26 AM

Hi Smanda,

I'd first like to say that I am sorry that you have been dealing with these issues for several years. You know your body best so if you are sure there is something wrong, keep seeking answers. I too had negative tests, with the exception of my ANA. I kept seeking answers for my symptoms and was eventually diagnosed after 3 years and over 10 physician's opinions.

In the meantime you have support here, so don't hesitate to reach out when you have questions or just want to vent.
I may have Scleroderma, but Scleroderma doesn't have me!

#3 janey

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Posted 13 June 2009 - 07:38 AM

smanda,
Just based on the fact that you are developing new symptoms, indicates that something may be going on that certainly needs to be checked out. I'm no doctor, but as a patient, I would be doing exactly what you're doing - going to a doctor to see what's going on. I do know that there are people sclero and other connective tissue tissues that have negative ANA's, As far as the nailfold capillaroscopy test is concerned, I thought that if you had Raynaud's - primary or secondary - that something abnormal shows up - but then again - I'm no doctor. We have a lot of information on it, so please check out the previous link that I provided.

After 6 years of testing and no diagnosis, I would tend to agree with you - it's time to see another doctor. I can't tell you how many "new" doctors I have seen. All in all, each move has been a good one. So get pushing for answers. Please let us know what you find out.

Big Hugs,


Janey Willis
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#4 Jeannie McClelland

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Posted 14 June 2009 - 04:36 AM

Hi Smanda,

I'm with the rest - time to see a different doctor.

When I did, it was breathing issues similar to yours that drove me to the center of excellence where I was diagnosed after an extensive work-up. The doctor that I saw from the beginning of that process is a pulmonologist. She ordered all sorts of tests, including things that I would have thought were strictly GI (and I didn't think my GERD was that bad then). Right from the beginning, her summary notes indicated she'd be referring me to the Rheumatology Clinic. She was right on track with everything she did.

So, given your breathing problems, I'd definitely push for more investigation and a diagnosis. So many things associated with autoimmune conditions have a much better outcome if diagnosed and treated early.

Best wishes,
Jeannie McClelland
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#5 smanda

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Posted 15 June 2009 - 02:02 AM

Thank you all for your advice.

I am seeing rheumatologist in July and will let you know the outcome.

Amandax

#6 Shelley Ensz

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Posted 16 June 2009 - 02:51 PM

Hi smanda,

Why don't you try a scleroderma expert this time around? It's not at all unusual, in fact, a national average, for it to take six years for women to be diagnosed with scleroderma (three years for men with the same symptoms).

You've certainly been good about biding your time and not freaking out about anything. The burning feeling around the cuticles -- if it is accompanied by redness -- might be what is called periungual erythema. I get that occasionally, although only once that a dermatologist noted it and put it in my chart, which prompted me to look it up years ago. It looks awful, like you're a survivor of a horrid manicure, but otherwise it's not too bothersome.

Oh dear, I was just going to write that periungual erythema is not related to scleroderma, but, silly me, I just did a web search and it came up with scleroderma as a leading cause, along with other connective tissue diseases. Huh. Well. Learn new things every day! We'll have to add that to the main site.

A real question is whether you have any skin tightness, or whether your lung involvement is due to pulmonary fibrosis? Still, at this point, I wouldn't settle for a normal rheumatologist. I'd trek on to a scleroderma expert center. Maybe they will have to follow you for awhile before garnering a definite diagnosis, but at least you'd have the best care for your symptoms, and appropriate testing, in the meantime.
Warm Hugs,

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

#7 Shelley Ensz

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Posted 16 June 2009 - 03:12 PM

Okay, it's done, our new (very brief) section on Periungual Erythema, on our Fingernails, Fingerprints, Nailfolds, and Cuticles page.
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 smanda

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Posted 17 June 2009 - 12:14 AM

Thanks again Shelley for your wise words.

The person I have been seeing specialises in Scleroderma actually so I feel I'm in best place really. It's just such a frustrating and lonely experience having symptoms and everyone thinking it's all pyschosomatic. I am booked to see the same sclero specialist again in a couple of weeks and have had ANA and sed/CRP rates done today so will let you know.

Thanks again.
Smanda

#9 debonair susie

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Posted 18 June 2009 - 05:34 AM

Hi Smanda,

Reading your post takes me back to the place you are now.

I began displaying symptoms in 1991, so started seeing a rheumatologist who was just starting out. She does research 2 1/2 days/week and sees patients the other 2 1/2 days. She has been great, over the years. Even though I moved away for 7 years, I kept her as my rheumatologist, as she knew my history very well and was an asset to "my team" of doctors.

However, despite numerous diagnostic tests, it took 4 years and was actually a clinical diagnosis that got me on the road to discovery.

The internist I had at the time, I owe a great deal. She admitted that she knew there were things going on, but sent me to a gastrologist, who would make the diagnoses of my underlying symptoms that had been mounting.

He rattled off all that I had...then...and I was overwhelmed! I had NO idea what Scleroderma, gastroesophageal reflux, Raynaud's, telangiactasias were...to name only a few.

I knew I had Fibromyalgia and Psoriasis, which I felt was quite plenty for one body.

My head was spinning... I didn't even know what to ask him! Once my husband was told, he went into denial. I was scared...just like you and most of us. No one I knew had heard of Sclero, so I was "in the dark" for quite some time.

When the kids gave me their computer was when I finally found my way here. I was still very overwhelmed, but so grateful, once I learned to take baby steps, as I became more familiar with the folks here and the realization that I was not alone!

That, in itself, was so comforting to me. Just knowing there were others who could relate to the feelings and symptoms of what was going on with me.

Having this support network helps greatly! Not only does one become more knowledgeable about their chronic illnesses, it's a wonderful feeling to have the family we have here. I have many friends right here and I LOVE it!

I'm so glad to see you back here and posting. Please keep us posted on how you are doing!
Special Hugs,

Susie Kraft
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#10 ladybug

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Posted 18 June 2009 - 06:25 AM

I have some mild redness, occasionally, around my fingernails but my nail capillary tests were normal so doctor said it was not from sclero. Psoriasis, diabetes and nail infections can also cause it. I do have bouts of eczema on my hands.