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Confused on diagnosis


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#1 amm555

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Posted 03 April 2015 - 11:51 AM

Hi Everyone,

 

I am brand new to this forum. I went to my primary doctor about a month ago because I had been experiencing what I now know is Raynaud's. She did blood work and my SCL 70 came back positive.

 

They told me I have Scleroderma and to see a rheumatologist. I saw him today and because I don't have any of the skin symptoms, he says I may not have it. He didn't even want to talk about it yet. I had read that it was common to just have Raynaud's for years before developing any other symptom, so I was quite surprised by what he said.  They then ran a huge amount of tests and rescheduled me for 3 weeks.

 

I had come to terms, so to speak, that this was going on and had done so much research and now I'm just so confused. I want to be hopeful, but don't want to then disappoint myself and have to go through finding out I do have it again or find out I have something else dangerous going on from all the tests they ran.

 

Do any of you have any advice? I'm sure, I just need to be patient and see what they find, but I'm confused and worried. I'm not normally an anxious person and don't really like the feeling ;) Thanks in advance for any advice!

 

Andee



#2 Shelley Ensz

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Posted 03 April 2015 - 12:03 PM

Hi Andee,

 

Welcome to Sclero Forums!  I need to leave for an appointment now, but wanted to at least say hello to you before I left. Many others will chime in with their experience. Basically scleroderma is a very difficult disease to diagnose; it often takes an average of six years from onset to diagnosis.  It is hardly ever diagnosed right away, except in really super severe and extremely obvious cases -- and even then we've heard of long delays.

 

Try to work on accepting the idea right now that you might just have Raynaud's and some antibodies. At least, that's what you have right now, right?  You are obviously also at risk for developing more symptoms down the road, either that or perhaps some general autoimmunity runs in your family in which case strange antibodies can appear and even one or two symptoms of connective tissue diseases, without anything full blown ever occurring. 

 

Try to focus on being flexible and resilient right now, as you will definitely need those skills, even if all future testing always shows that you are never any sicker.  You'll still need resilience just to cope with the possible fright of it, won't you?  You can do it, you can adjust to this, and we'll be here for you.

 

:hug-group:


Warm Hugs,

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

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#3 Margaret

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Posted 03 April 2015 - 03:27 PM

Hi Andee.....hello and welcome.....second time around!!   :)  I hate that when I lose a good long letter!!  :angry:

 

My son, at age 18,  had positive blood work, along with major fatigue,  internal hardening of the larynx, esophagus, and diaphragm. He had no Raynaud's or skin issues. The gastro doc and pediatric rheumatologist said sine scleroderma, but the expert Sclero doc said *Undifferentiated Connective tissue disease*.  He was put on Plaquenil and symptoms subsided considerably. That is not to say that UDCT is anything less of a disease than scleroderma, but experts have their guidelines to follow.  Either way, modern medicine has come a long way in treating the symptoms of each disease.    :emoticons-yes:

 

Keep us up to date on your findings/questions and come here for the most up to date/accurate information. 

 

Take care, Everyone.

Margaret

Mom to Gareth, 26 years old, DS/ASD



#4 Joelf

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Posted 03 April 2015 - 08:22 PM

Hi Andee,

Welcome to these forums!

I can understand how worried and confused you're feeling (step forward Yours Truly, who is paranoia personified ;) ) However,as Margaret and Shelley have said, unfortunately as Scleroderma presents itself in so many different ways it's very hard to arrive at a diagnosis and positive blood tests don't always mean that the full blown disease will develop. I know how frustrating that can be, as the unknown is much more worrying than when the diagnosis is presented as a fait accompli.

Unfortunately, the worry and anxiety associated with not knowing if it will develop can actually make things much worse (stress is not good for autoimmune problems) and although obviously I can't predict how the disease will pan out for you, it may never progress any further than Raynaud's (which many people have without having Scleroderma) and a few interesting antibodies.

Once you see your doctor again in three weeks and the results of your tests are known, you'll hopefully be in a better position to determine how it might progress. Please do update us after your appointment.

Kind regards,


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#5 charliehorse

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Posted 04 April 2015 - 10:08 PM

Hi Andee, 

 

I remember being in the same place as you. Not knowing is incredibly stressful. Don't go researching Scleroderma in too much depth as the internet will freak you out with worst case scenarios. This can lead to a serious case of catastrophizing. Even if you are eventually diagnosed, you might have a limited form, stabilize and experience few problems. 

 

Useful research is finding ways to keep warm to prevent Raynaud's attacks. Invest time online shopping for cute gloves and scarves and hats! 

 

I wish you all the best and much calm.  :flowers:


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#6 Amanda Thorpe

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Posted 12 April 2015 - 01:20 PM

Hello Andee

 

Welcome and may I echo what has already been said, until you have specific symptoms you don't really have scleroderma because positive blood work without symptoms means very little. Sure, Raynaud's is a symptom but most people with Raynaud's don't have scleroderma although most people with scleroderma have Raynaud's. You may never develop any symptoms either.

 

I have negative blood work and always have done but have both localised and systemic scleroderma then there's you with no symptoms but positive blood work. Wanna swap? No?! You might find it helpful to have a look at our video series especially those about diagnosis and symptoms of scleroderma.

 

You are on the the rheumatologist's radar having tests etc so you're not starting from the other side of the door. Please let us know the outcome of your appointment and keep posting.


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#7 Shelley Ensz

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Posted 13 April 2015 - 03:01 PM

Hi Andee,

 

How are you holding up while waiting? I know it's impossible to follow advice such as "don't even think of scleroderma for the next few weeks" as then it's all we can think about. However this would be a great time to try to focus your thoughts on nearly anything else, as much as possible.  Such as devote yourself to an existing hobby or find a new one and see how much you can learn about it in the next few weeks.

 

I'm aware that doesn't work 24 hours a day, but the fine art of distraction is a powerful force for helping us cope with uncertainty and change. I try to put one "happy" thing on my calendar every single day, and then when my mind goes looking for trouble, I try to gently steer it towards all the fun that I have to look forward to. It doesn't have to be much, or even very fancy; they key for me is just defining it and putting it on the calendar.  It can be as simple as "take a photo of a flower on Friday"...something, anything that is positive.

 

I know this tip might sound very lame, and it may not be useful for you at all, but it might strike a chord with someone else reading this who is stuck in circumstances similar to yours, and it might be the idea they need to be able to cope better while they are waiting for answers.  The thing is, with scleroderma and many other chronic illnesses, the sheer mind-numbing waiting is a chronic condition itself. It never goes away!  We are always waiting for the next appointment, the next test, the next batch of results, the next symptom; and while focusing on all those nexts, we can so very quickly and easily lose sight of our life, and our enjoyment of it, today.

 

It's very possible, and even very necessary, to continue to enjoy life -- and even increase our enjoyment of it -- even when our health is threatened or declining. But it does not come naturally!  It requires awareness of the threat to our sanguinity and determination to carry our heavy load as though it is light as a feather; taking it seriously but not letting ourselves become serious, all at the same time.

 

Well now, where did I get off on this tangent?  I just want to let you know, we all know how very challenging it is to even vaguely wonder about having scleroderma. And most of us would say the very worst time of all for us was when we were left up in the air, just wondering, especially if we had not yet thoroughly developed our stress coping skills!

 

: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.

#8 amm555

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Posted 26 April 2015 - 09:57 AM

Thank you so much to all of you for taking the time to reply and share your insights. So caring of you! Thanks to you Shelley also for checking up on me! I didn't get a notification of your reply so I'm just now reading your encouraging words, thank you so much! I had my follow up this week and all the tests came back clear except the SCL 70 again and I continue to have the episodes of Raynaud's. My doctor did a nice job showing me what to look for in terms of the skin thickening. But while he wants me to be aware of future symptoms, he doesn't want me to focus on the possibility of scleroderma and let it cause me anxiety.....easier said than done!! I'm thankful that I have a good chance of never developing this, but still find myself fearing it. I feel like so much of my attention is captured by health. I'm 32 and deal with endometriosis and have had a real struggle with figuring out how to manage it now that I'm done having babies as well as being diagnosed with Interstitial Cystitis this year. I'm obviously being asked to stretch my faith in this fear of unknown and possibility of another disease. I'm so thankful for all of your wisdom and willingness to share with those of us in this time of the unknown. You are such a blessing!

Thanks,

Andee



#9 Joelf

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Posted 26 April 2015 - 07:49 PM

Hi Andee,

Your doctor sounds as if he has quite a sensible attitude (being realistic, but not unduly alarmist) and I hope that this will help you to feel a little easier.

We have a medical page on Interstitial Cystitis which I hope you'll find helpful and informative.

To receive notifications of replies to your posts, just go to the top right hand corner of the forums and click on your name, select "My settings" and then "Notification Options". You'll find that there are various boxes you can select which gives you the options to be notified and follow any topics/posts in which you're interested.

Kind regards,

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#10 Amanda Thorpe

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Posted 27 April 2015 - 04:46 PM

Hello Andee

I also have IC and was diagnosed with it in 2004, 3 years before the scleroderma. IC can be treated and has flares and calm periods, just get yourself a urologist used to treating it.

We can't choose our circumstances but we can choose how we deal with them for sure! Shelley always has excellent suggestions about making the most of things and it certainly is possible!

Take care and keep posting.
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#11 amm555

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Posted 18 May 2015 - 05:10 PM

I hope you don't mind me asking for more advice. I have recently developed a numb/tingly feeling on my face (in the area next to my mouth). Is this something you think I should contact my rheumatologist about? If the skin was thickening there, is that how it would feel? Thanks for any knowledge you can share with me!

#12 Joelf

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Posted 18 May 2015 - 07:56 PM

Hi Andee,

The numbness and tingling you're feeling could be nothing to do with Scleroderma; unfortunately it's very hard not to attribute every symptom you experience to the disease. I would suggest that if you're worried and are having any new or different symptoms then it's worth contacting your rheumatologist, if only to set your mind at rest. The chances are it may be nothing to worry about, but worrying about it can exacerbate any problems.

Kind regards,

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#13 Amanda Thorpe

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Posted 19 May 2015 - 04:08 AM

Hello Amm55

Sorry but I'm with Jo, it could be anything.

I have tight skin and at diagnosis had it almost everywhere but I never had numbness or tingling in the area beforehand (see below). Afterwards and still now I have tingling and pins and needles underneath the tight skin. That's from neuropathy caused by the tight skin and let me say the pain can be ferocious.

I know that when you have scleroderma the temptation is to park everything at its door but it's not always the culprit.

See your doctor just in case it's something sinister at worse or something else at best and please let us know.

Take care.

(search the site for numbness, there's a lot of talk about it as a symptom)
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#14 judyt

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Posted 19 May 2015 - 05:32 PM

Hi Andee,

 

On the other hand I have Limited Systemic Sclerosis with no skin involvement.   My Scl70 is negative and ANA somewhere round 1:680 Centromere pattern.     I have internal involvement but did pretty well until lately when the wheels have started to fall off.

 

I am 71 at the moment and starting to need help sometimes.   But I managed to be the usual sort of wife and mother and even got to be able to look after our Grandchildren when they arrived.   They are 22, 12 and 8 now so I can't complain.

 

Keep yourself busy with life and don't waste a day regretting anything.   If this turns out to be Sclero then learn to accept it and hope that you get off lightly.

 

Best wishes

Judyt



#15 amm555

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Posted 19 May 2015 - 06:28 PM

Thank you Judy, Amanda and Joelf! I so appreciate your responses! I'm wondering what does it feel like at first? Just that the skin is tight and doesn't move easily? Thanks again so much!

#16 Amanda Thorpe

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Posted 22 May 2015 - 12:58 AM

Hello Andee

 

My skin tightening happened so fast. I don't think there are any predictors I can tell you to look out for. Example, I had swelling, pins and needles in my hands at the beginning of scleroderma and now have sclerodactyly (tight skin on the hands restricting the joints) but other people also have swelling and pain in the beginning but don't have tight skin on their hands now.

 

We are all so different, we have our own tailor made version of this disease and your scleroderma will be exactly that, yours!

 

Take care.

 

 

 

.


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