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Presentation of Raynaud very important for diagnosis


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#1 Chopper

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Posted 22 September 2011 - 09:10 PM

Hello, All!

First of all, I read a short article at the doctor's office today written by Dr. Thomas Medsger that the "s" in Sjogren's and Raynaud's is being removed! To further complicate how we all pronounce Raynaud! Ray-no! Oh no!

Back in April I thought I had Lupus so I went to a Lupus center in Pittsburgh. They did a full exam and blood panel, of course. I recall them saying after my exam, "at least you don't have scleroderma". Well one week later I got the call that I tested positive for limited scleroderma as well as Hashimotos! At my follow up visit at the Lupus center 3 months later we set up an appointment for me at the scleroderma center for another 3 months later, which was today. As far as 'symptoms' of scleroderma, I thought that I had Raynaud, telangiectasia, and GI trouble starting with gallbladder dysfunction, gastroparesis, gastritis and constipation. The only skin involvement was a little puckering on my left index fingertip.

I was asked to specifically explain the presentation of my Raynaud attacks. I explained my hands go white, then my fingertips go brilliant red, and longer exposures to cold my nail beds and hands get bluish and same with my feet. I was told this is atypical of Raynaud. The impression I then received of typical Raynaud is more entire fingers rather than the entire hand. Maybe some of you could help describe your presentation?

Apparently the telangiectasia around my mouth and face and the one lone one on my index finger nail fold seemed atypical to the doctor as well since the nailfold capillary exam showed my nails as mostly normal. The episode of splinter hemorrhages I had must not be a diagnostic factor. So the doctor told me she was not convinced I have scleroderma. We are re-doing the bloodwork to see if the marker shows up for limited scleroderma. A research center is doing it so it will take 6 weeks for the results. In the meantime I'm being referred to a GI who works with alot of sclero patients for further assessment to see if my GI issues could be sclero related.

I have been gluten free for well over a year, my Hashimoto's is under control since June, so what would cause my atypical presentation of Raynaud and telangiectasia, as well as the gastroparesis, gastritis, gallbladder failure, and constipation? Hmmm.... And I wonder what kind of testing the GI doctor will recommend in order to diagnose scleroderma?

Any thoughts?

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Shelley Ensz

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Posted 22 September 2011 - 09:36 PM

Hi Chopper,

My thoughts are: oh my. And that is why we call this a Difficult Diagnosis.

I really don't know what to think. I was told so many different weird things on my way to a sound diagnosis, it made my head spin. On the one hand it's lupus, on the other its scleroderma, ahem no, lupus AND scleroderma, no wait, you're perfectly healthy after all! And then, oh my bad, it's probably scleroderma -- no wait, I take that back, it's definitely scleroderma...I think.

You're on a merry-go-round now. The most you can do is try to take it all with a grain of salt, both when they say you have it and when they say you don't have it. It can take awhile for the dust to settle. Remember, it's an average of six years to diagnosis for most women with scleroderma (and three for men, you lucky ducks. Just kidding, of course, as there's nothing lucky about scleroderma nor about being diagnosed with it.)

Just remember we're here for you, no matter what happens, good or bad or in between. And that most of us have already been there, done that, or are still doing it.

Bad news on the Ray-no's! I couldn't pronounce it in the first place, not to mention without the "s". The word always catches me up short and makes me terribly uncomfortable if I'm forced into a corner on trying to say it properly.

As for atypical stuff? Huh. Most of us are atypical, I'd say. Few of us have been so lucky as to have had our bodies read the chapter on Classic Symptoms of Scleroderma and then faithfully follow it, by the book, to thus garner a quick, easy-breezy diagnosis.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#3 Joelf

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Posted 23 September 2011 - 01:41 AM

Hi Chopper,

I think one of the feelings about Scleroderma is frustration; it is such a complex disease with so many different presentations that it's hardly surprising that many of us are very confused about it. As Shelley has said the diagnosis of Scleroderma relies on so many diiferent factors and each person's symptoms are unique.

I have Raynaud's and it presents itself as completely white, tingling and sometimes painful fingers, particularly on my right hand, although my left fingers are similarly affected. As the attack wears off, my fingers go from white to purple then red before coming back to a 'normal' skin colour. On a couple of occasions I have had it on my toes, although to a much lesser degree. I sometimes shake my fingers rigorously during an attack to try and relieve the painful tingling but really to no avail. I've never had my whole hand affected though, only my fingers.

I think that Raynaud's and Sjogren's is usually pronounced with the apostrophe 'S' as they sometimes have the word 'phenomenon' after them (just my idea, though!! ;) )

The interesting thing about having Scleroderma is that we're all, in our own way, unique!! ;) :lol:

Kind regards,

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#4 Amanda Thorpe

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Posted 23 September 2011 - 05:13 AM

Hello Chopper

My actual diagnosis is atypical diffuse cutaneous systemic sclerosis so I am officially atypical by diagnosis! In addition my Raynaud's only turns my hands and feet white, not red or blue. Oh yes and then there's my blood work which is all negative (ANA, SCL-70) with a normal rheumatoid factor. Despite all this I still have scleroderma!

Take care.
Amanda Thorpe
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#5 marsha

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Posted 23 September 2011 - 07:37 AM

Morning Chopper,

I will tell you from what I have learned about Raynaud(s) is this NO two people present the same!!! As with scleroderma!! My story short version; 11 years ago August I presented with an ashy white middle finger, it was just the tip (to the first knuckle). It hurt and felt just like my finger fell asleep. Never turned red or blue; anyways over the next 5 years it encompassed both my hands and feet. They turn white, red and then black..... it's quite scary.

One thing that stands out in my mind is when I saw my scleroderma expert, he told me that there is no way to confuse Sclero with Lupus, because of the centromere pattern that is only seen in Sclero; did anyone see this? Keep your chin up!!

Lots of hugs,

Marsha

#6 Buttons

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Posted 23 September 2011 - 12:42 PM

My Raynaud's is just like Marsha's. It started off with just part of a finger but gradually the attacks began to affect the whole of 2 or 3 fingers and now can attack the whole of my hands and feet. My husband calls it chicken fingers when they turn white, totally numb, then move on to deep blue/purple and finally bright red and swelling which burn.

Buttons

#7 Margaret

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Posted 23 September 2011 - 08:43 PM

Hi Chopper ,

Gareth's hands blanch out completely white from the wrists down. They slowly turn red, and then, back to normal color. His rheumatologist told me this was atypical Raynaud's but the better of the two, because it's supposably better than if the fingers alone blanch out. Either way, it hurts/tingles.

Take care, Everyone.
Margaret

#8 judyt

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Posted 24 September 2011 - 09:28 PM

Hi Chopper,
Just reading Marsha's post where she mentioned the centromere pattern which has to be present to diagnose scleroderma. I am interested to read that he said that, because that is what my first ANA showed back in 2003 when I was diagnosed. I have not seen much mention of that pattern since and was beginning to think that it wasn't the only one to be counted as a precise diagnosis. As far as I personally am concerned it took many many years for me to find anybody who had any idea at all what was going on, but once I had the ANA results there has been no question as whether that is the right diagnosis.

As for your other symptoms, I think I have to agree with others that there probably is no hard and fast rule about the appearance of telangectasia, or the progression of a Raynaud's attack, or sclerodactyly, or any other thing they can dream up.

I have been told I definitely have CREST with all the letters included but I can tell you for sure that I don't have sclerodactyly hands, my telangectasia are few and far between, I have had only one tiny bit of Calcinosis once about 1988, never before or since, I haven't had a Raynaud's attack for at least 18 months but I do have Esophageal Dysmotility in a big way. I have GERD, gastritis, pain around my Gall Bladder but no stones, rectal prolapse and incompetent sphincters.

I think I am with your doctor on this - there is a blood test which will confirm Sclero and from there on in you have to just treat what happens as it happens, stay calm and philosophical and accept that things could be worse.

Best wishes on your journey, from the upside down side of the world.

Judy T

#9 Amanda Thorpe

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Posted 25 September 2011 - 11:30 AM

"there is a blood test which will confirm Sclero"

Well this is not my experience. My ANA and therefore SCL-70 are both negative and even my rheumatoid factor is normal so my blood tests say I do not have scleroderma or even a rheumatic disease. My diagnosis, based on clinical symptoms, is aytipical diffuse cutaneous systemic sclerosis now with heart involvement and ulcers.

The atypical is due to how it presented and progressed but I guess it could also encompass the blood work issue.

Take care.
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#10 Snowbird

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Posted 25 September 2011 - 03:28 PM

Hi Chopper,

Mine too are all over the place. Sometimes 2-3 fingers at one time on each hand. I go white, red, and have started doing the blue/purple thing as well. When the blue/purple arrived, it was from my forearms down to my entire hands, really strange looking. Sometimes, some of my fingers split right down the middle with half of my finger white and half of it red -- just like a line drawn down the centre of it. My feet also like those colours.
Sending good wishes your way!

#11 Chopper

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Posted 25 September 2011 - 08:34 PM

Thank you all for replying!

Shelley: I thought when my rheumatologist told me I tested positive for limited scleroderma, and she assumed it was in the early stages, that I was fortunate to get a diagnosis. My GI symptoms started in spring of 2009. Thank you for reminding me to take it with a grain of salt. I love to solve problems and I thought I had a diagnosis, but I guess I felt as though I was thrown back into mystery, and it bothered me. Thanks for being there no matter what. If it turns out they won't label me with sclero, I certainly appreciate what I've learned here and all the help I've received.

Jo: I didn't appreciate how the disease has so many different presentations until recently and that it causes so much confusion. I left feeling more confused than ever after my 1st visit with the sclero doctor, but I'm feeling better after thinking about things over the weekend. Thanks.

Amanda: It was comforting to me to know you're atypical! If I'm truly a scleroderma patient, I'll be atypical as well! We can be atypical together!

Buttons: After reading your description, I'm definitely atypical with the Raynaud's. Thank you for your input!

Margaret: I was comforted to know that I present similar to Gareth. I was wondering this weekend if it was all in my head! Also good to know that it's the better of the two! And yes, it hurts, tingles, yet feels numb.

Judy: I'm very anxious to see in 6 weeks if I still test positive. This weekend I found myself wondering if any of these things were in my head. I re-examined myself and I have no doubt that I have significant symptoms and I'm not crazy! I think why I want a diagnosis is because I want to make sure I'm screened well for other potential problems. Thanks!

Snowbird: Thanks for sharing that! How interesting!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#12 judyt

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Posted 26 September 2011 - 12:08 AM

Sorry Amanda - I forgot about you!! I have read that your blood tests are negative in spite of your symptoms so that blows that theory out of the water doesn't it.

I got my head so full of trying to figure out how these things work that I completely forgot to allow for the exception that proves the rule.

Best wishes from the upside down side of the world.

Judy T

#13 Snowbird

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Posted 26 September 2011 - 05:39 PM

Margaret

Did Gareth's doctor elaborate on why it would possibly be the better of the two? I find that interesting too.

Chopper

Just an FYI, my specialist told me it didn't matter whether or not the bloodwork showed again (she said once it shows, it shows)...if that helps you?
Sending good wishes your way!

#14 Amanda Thorpe

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Posted 30 September 2011 - 08:10 AM

Hello Judy
Oh yeah! That's me baby...the exception that proves the rule! :emoticons-clap: I say don't just get a rare disease get it atypically so you can be even more unusal! :woohoo:

Take care
Amanda Thorpe
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#15 Margaret

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Posted 30 September 2011 - 10:44 AM

Hi Chopper,

Yes, the rheumatologist did explain why it was the better of the two and I think I remember it has to do with blood pressure. It has to do with the fact that the veins/arteries in the wrist are larger, so when they shut down and reopen, the blood flow is a larger amount, forcing open all the veins/arteries throughout the fingers. If only one or two fingers shut down, then there's less blood pressure on *each* finger to get them to reopen...thus, leaving open the possibility of them staying closed down for a longer period of time and reducing the blood needed for healing ulcers, etc. Does that make sense?

As Shelley says, I am not a doctor so, please, don't quote me on this!!!

Take care, Everyone.

Margaret