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New here! Positive Scl-70 antibody.


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Hi all!  I'm new here.

 

I developed some very scary neurological symptoms following a flu shot in December.  My neurologist and immunologist ordered numerous tests to confirm or deny chronic inflammatory demyelinating polyneuropathy (CIDP) which is a chronic form of Guillain Barre. I had a blood test done that was positive for the connective tissue panel and further work up was needed. Yesterday I received my results from the lab - Positive Scl-70 negative ANA. 

 

My understanding is this points to systemic sclerosis; like many of you I'm sure I felt like I had been kicked in the gut and the face. To be honest - I'm terrified! I've been sick all night over it, I can't sleep and can't even muster up the strength to stay hydrated.  I have two beautiful children 13 and 8 and I can't speak too much on that because I'll be a bumbling mess, but I guess the next step is rheumatologist. The wait is months and that scares me.

 

How do I get the strength to put this in it's place and not be so sick with worry!? Thank you! 

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Meggie, 

 

I am much like you in the area of worrying and over worrying. I know that my words won't mean much to you now but please, please, please try not to worry sick about your follow up labs until at least you talk to the doctor. Just try. Focus on the positives in your life (your kids for one).

 

Stressing over this won't help one bit. 

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Hi Meggiebeth,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing some worrying symptoms and blood test results. Please note I have no medical knowledge (apart from a now out of date first aid certificate). However, I would reiterate the advice we always give regarding blood tests; whilst a useful tool to help to obtain the full picture, they are by no means conclusive or the be all and end all of a diagnosis and it is possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Far more important are the clinical signs and symptoms of the disease. We do have numerous threads on this subject.

 

Although it is possible that you could develop systemic scleroderma with all it's various complications (or even CIDP) it's equally possible that you may never have a problem, but obviously at this stage it's difficult to know which way things will go. One of the main problems in obtaining a definite scleroderma diagnosis (or a diagnosis for any autoimmune disease, come to that), is that these diseases are incredibly complex and affect all sufferers differently. Actually the average time to obtain a diagnosis is, I believe, six years and also the diagnosis can be changed, so because of the bizarre nature of scleroderma, it is possible to be un-diagnosed and then re-diagnosed, as the symptoms can also wax and wane. I'm afraid this can be a pattern with many autoimmune diseases. I realise how worrying and frustrating this can be and I'm afraid that very often the rheumatologist does recommend a policy of wait and see, until further symptoms manifest themselves or not, as the case may be. We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise. 

 

However, the crippling anxiety with which you're suffering is most certainly not helping the situation one little bit; I understand how frightened and worried you're feeling, but unfortunately one thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune or any other diseases. I can see that the worry of the effect of this disease on your family on top of everything else is making things much worse for you and so I would suggest that one of the things that might help you would be to seek professional counselling or similar to deal with your severe anxiety. You would then, perhaps, be in a better place to deal with any possible diagnosis of scleroderma, or any other disease.

 

:hug-group:

 

Kind regards,

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Thank you so much for the advice and I agree.

 

I'm doing better today in terms of anxiety, but unfortunately it comes in waves! I am going to do my very best to stay positive and focus on my emotional health as well as physical. I think maybe decompressing by getting a massage or facial!  I am going to focus on good in, good out. Eating healthy, staying active, breathing! I've started the process of getting medical records to Dr. Fischer here in Colorado (on the list) so hopefully I will consult with him soon! 

 

Thank you again and bless you and your journey!

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Hi Meggiebeth,

 

You're very welcome and I'm glad that you're feeling a little better and more positive.

 

Please do keep posting and let us know how you get on when you have your appointment with Dr. Fischer.

 

Enjoy your facial and massage!!:wink: :happy:

 

Kind regards, 

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Hi MeggieBeth,

 

Welcome to Sclero Forums.  I'm very sorry you have such health issues right now.  I want to reiterate Jo's advice, because anxiety can be far more devastating than scleroderma, CIDP or any other disease.  The general recommendation is that if we aren't back to our normal, bouncy self within two weeks of a major disruption (such as this), then we should see our primary care doctor for evaluation and possible referral or treatment.

 

Basically, all we need to do is further develop our resilience. Definitely indulge in all your usual self-care routines now, just like you are planning! Just beware they might not be sufficient unto themselves at this time, and if they aren't, it merely represents a grand opportunity to learn how to deal even more successfully with stress. 

 

The thing about ANY chronic illness is that it can be a tremendous source of ongoing and complicated stress.  So the more adept we are at dealing with those stresses, the better we can manage our health, overall, and the more happiness and joy we can find in our daily life.  Because, importantly, we do not have to be healthy in order to be happy and we do not have to wait until we are diagnosed/treated/healed in order to be happy. 

 

You're doing extremely well by seeking solid sources for support and information, and making plans to see a real scleroderma expert.  Other than the arrangements for that, there's not much more you can do, or need to do, besides quelling the anxiety.  It really is whatever it is, already, and no amount of thinking or wishing or dreading or hoping is going to change the matter.  And, along with us, you can get through this, fine and dandy, because we'll be here for you. 

 

:hug-group:

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Thank you all sooooo much, I definitely need to find ways to manage my stress.  I have such a powerful mind....I feel like I'm capable of manifesting symptoms.  I am trying to rely on my faith.  I appreciate the words of advice and sometimes it feels like tough love, but it's so true! Thank you all again and I'll be sending good thoughts to everyone! 

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Hi MeggieBeth,

 

You're not alone. We are all capable of manifesting symptoms out of anxiety. Which is one really major reason to get and keep our stress levels under control, so that we don't confuse our illness with our reaction to it.  Often, we are actually an awful lot less sick, than our anxiety thinks we are!  By the same token I might add that often, we are often an awful lot MORE sicker than our family, friends, and doctors think we are.  Its such a dichotomy! 

 

Also, anxiety can derail our efforts for a diagnosis, in that, if our emotional reaction is out of bounds, it is very easy for our doctors to chalk up all our symptoms to mental illness or hypochondria. They can even feel obliged to withhold a diagnosis until they believe we are mentally stable enough to handle it, because their very first obligation is to "do no harm".  I was actually shocked when I really grasped that, because I thought, in my naive little way, that their first obligation was to always tell the truth, and to tell it as soon as possible.  It's confounding when they can look at it from the angle that the truth can harm, sometimes. 

 

Obviously, if we can't even handle the basic idea of scleroderma, there's no way we'd be able to handle the reality of it. It's ironic, but to handle physical illness, most of us need to develop very strong psychological muscles, and at a time when we also feel the least capable of it.  But, it can be done. And you can do it. It just requires mustering all the resources you can find and making it a priority. 

 

:hug-group:

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Hello MeggieBeth.

 

I too am new to this site but I was diagnosed 5 years ago with CREST syndrome. My first rheumatologist 10 years ago told me about the AS and Raynaud's then asked me what pain pills I wanted! Seriously?! I've never taken pain pills and told him I want a cure or Real help! He looked at me as though I were insane. I have progressive systemic sclerosis as well as Raynaud's Phenomenon and active ankylosing spondylitis. Talk about stress, anxiety and depression!!

 

You must stay calm, focused and live to your fullest every moment which is difficult, but keep your laughter and love and embrace it! I have found meditation to be extremely calming and soothing. Also try yoga and stretching!!

 

My special angel blessings to you and your family!!

 

Donna

 

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Hi Donna,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with scleroderma, ankylosing spondylitis and Raynaud's. It sounds as if you have quite enough on your plate to contend with. I hope that in view of your experience with your first rheumatologist, you're consulting a listed scleroderma expert,  as you can see that such a complex disease requires specialist knowledge and expertise.

 

I'm glad you've found a way to deal with the worry and uncertainty of the diseases.

 

Kind regards,

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I just got diagnosed with autoimmune disease lupus and Scleroderma.

 

It seems to effect me a lot from itchy skin, weight gain, bones hurt, headaches, short breath, fingers and knees and feet ache, hair falling out.

 

I would like to know what causes flares and this awful heartburn. Any answers, please would help me.

 

I'm a mom of seven so it's a little scary.

 

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Hi Lalita,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently been diagnosed with lupus and scleroderma; it must be a worrying time for you, especially with a young family to consider.

 

Unfortunately, autoimmune conditions do have a habit of turning up in pairs (or even groups) together. When systemic sclerosis (in either the limited or the diffuse form) appears in conjunction with features of one or more other connective tissue diseases (such as systemic lupus erythematosus) it is called "overlap." I've included links to our medical pages on Lupus in Overlap, Scleroderma in Overlap and Gastrointestinal Involvement, including Reflux (Heartburn) and GERD, to give you some more information.

 

The actual cause of scleroderma is mainly unknown, but it can be due to a number of different factors. However, areas being investigated include autoimmunity, environmental exposures, genetics, and infections. Many researchers feel that several factors work together to induce scleroderma, such as a genetic inclination along with exposure to a toxin or infection which triggers the illness. As we've reiterated earlier in this thread, one of the worst triggers for autoimmune diseases is anxiety, so we do advise our members to obtain professional counselling, should they find it hard to cope with the constant worry of the illness, to help mitigate the effects of constant stress on an already over active immune system.

 

Kind regards,

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Hello Donna and Lalita,

 

Welcome to Sclero Forums!  It looks like this is becoming the newcomers thread for the week. I just want to say how glad we are to have you with us, and I look forward to hearing more from both of you. 

 

:hug-group:

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