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Ashley1100

I'm young and so scared - please help

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Hi all,

 

I just turned 21 on the 11th, and I'm in the process of seeing what's going on with me.

I've been experiencing bone, joint, and body pains, weird skin rashes, and IBS symptoms for years now. I'm in England studying abroad and my general practitioner here thought it might be autoimmune.

 

I'm in the process of being tested etc. Well to my worst fear, I tested positive for ANA/ACA (centromere) and was told that was highly correlated with CREST. I have severe health anxiety and OCD, so I've sent myself into a frenzy by researching, joining forums, etc.

 

The thing is, the trainee specialist I saw was so dismissive because I have no skin involvement. So she sent me away. I'm going back on Tuesday to see her head consultant to defend myself. I just want my organs checked, etc.

 

I'm so scared I won't make it to even 30 years old. I'm so so scared because I have no answers and don't know if my organs are already involved or anything. and I can't stop having panic attacks and crying.

Is it true, is this disease a death sentence?

 

I'm so young and haven't accomplished much at all yet. I can't deal with the anxiety and the scary stories I'm reading about lung involvement, death, etc.

 

Please help me.

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Hi Ashley,

 

I live on the other side of the world from where you are, but in 1965 when I was 21 and on my OE to Europe and Britain, I started getting the sort of health issues you describe.   In my case more Raynaud's Phenomenon and Gastric pain but nontheless very similar.

 

Eventually as years went by I started having more internal problems but NO SKIN INVOLVEMENT that I was aware of.

 

In 2002/3 I  was finally diagnosed with CREST Syndrome which is now more commonly called Systemic Sclerosis.

 

Do your arithmetic and you will see that I am now 73 and not ready to pass away.   I have had a good life, albeit restricted by all the funny things which happened along the way.  I was married for 51 years and 3 days when my husband passed away, and now I am loved and cared for by my children and grandchildren.

 

Not a death sentence by any stretch of the imagination.

 

The first thing to do is to get yourself to a Scleroderma Expert of which there are plenty in that part of the world, then make sure you calm down, learn to cope with what comes along and get as much good care as you can.

 

Keep in touch with us here and trust this site to give you good information.  Keep away from Dr. Google.

 

Best wishes

Judyt


Judy Trewartha

(Retired) ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Ashley,

 

My son started having issues and positive blood work at age 18.  He'll be 29 years old next month and even though he's had his ups and downs, he's still very much alive and kicking.   :lol:   Because of the OCD and anxiety issues you suffer from (I'm not sure if this is new to you) but I want to let you know that Gareth went into a severe depression after diagnosis and the doctor told me that the same autoimmune issues that attack the rest of your body can also affect the brain chemistry.  Please, don't hesitate to discuss your concerns with a doctor/psychiatrist.  There may be medication to help ease the anxiety/OCD. 

 

Continue to ask questions on the forum here and someone will usually chime in with their experiences.

 

Take care, Everyone.

Margaret

Mom to Gareth, 28 years old, DS/ASD

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Hi Ashley,

 

Welcome to these forums!

 

I can understand how anxious and worried you're feeling; nobody likes having the prospect of an unknown and rather scary illness hanging over them. However, the best thing you have done is joined this forum, where you will benefit from the support and advice of our members. The worst thing you have done is to Google your symptoms and frighten yourself witless; there is an awful lot of rubbish on the internet about scleroderma and autoimmune diseases and it's so easy to read this and spend all your time convincing yourself that you have something dreadfully wrong with you and that each day will be your last. (I know this, because I've been there, done that and got the T-shirt! :wink::lol: )

 

Firstly, I would reiterate Judy's and Margaret's advice, having scleroderma is not necessarily a death sentence. I have lung involvement and despite the words of wisdom from your trainee consultant, I have almost no skin involvement, but definitely have systemic scleroderma. However, I fully intend to live for a great many more years (if only to get my money's worth from my pensions! :wink: )  Also having positive blood test results are by no means the be all and end all of a scleroderma diagnosis, no matter what some scleroderma websites might tell you, as it is perfectly possible to have positive antibodies and yet never go on to develop the full blown disease and vice versa, as many of our members can testify.

 

You should, however, try and get a referral to a listed scleroderma expert, rather than mucking around with a common or garden rheumatologist as a complex disease like scleroderma requires specialist knowledge and expertise and should not be left to the mercies of a trainee/junior consultant.

 

One thing that is certain to exacerbate your illness is the stress involved in trying to find a diagnosis, as stress can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases. So although I realise that it's easy to say, you can really help yourself by trying not to worry quite so frantically. Margaret's good advice about consulting your doctor for help with your anxiety issues is something that perhaps you could consider and it is much easier to deal with a worrying diagnosis if you're feeling stronger mentally.

 

Please do keep posting and I'm sure we will have other members who can help and encourage you.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi guys, thank you so much for your replies.

I'm going to see a consultant who is on the list of specialists you sent me. He's suppose to be good; however his trainee was the one who saw me the first time. So I'm hoping that doesn't interfere with anything. I'm hoping he knows his stuff and will look at me further and LISTEN. I will fight to get my organs checked out even if I can't get a diagnosis.

As for my mental health, this has been an issue since my early teens and I do have anxiety meds for when needed; but I try to avoid taking them a lot because they are addictive and build a tolerance quickly.
I had my OCD and anxiety under control until all over this and now it's just absolutely unbearable.

Can you guys answer me some questions?
How long have you had the disease?

What did your specialists say about prognosis? (I know some of you aren't seeing specialists though)

What type of internal involvement do you have and is it serious / how long did it take to develop?

How do you stay positive and stay away from the internet?


Thank you guys again, I'm just so scared.

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Hi Ashley,

 

I'm very pleased to hear that you're under treatment from a scleroderma expert, albeit the junior consultant and not just any old rheumatologist, which was what I feared when reading your first post. You should be assured, therefore, that you should given the correct medical tests to determine a diagnosis, although with such a complex disease, this can be difficult and can take a while.

 

I was diagnosed with scleroderma in 2009, although I had been feeling pretty rough for probably eighteen months to two years before that, with many of the classic symptoms, which I now know related to the disease. I was fortunate (or unfortunate, depending on your point of view) in that I developed lung involvement symptoms fairly early on in the disease and thankfully had a general practitioner who was on the ball and sent me to a local lung consultant, who was also up to speed (and didn't have an ego) so she was happy to refer me to a top lung hospital, The Royal Brompton. They gave me just about every lung test known to man and because they were familiar with the pattern of scleroderma lung disease, they were able to diagnose and treat me very quickly, which was extremely successful. They also referred me to The Royal Free Hospital, who confirmed the diagnosis, although by then I had received their treatment and was much improved. I actually have a fibrosing organising, non specific interstitial pneumonia (NSIP), which, if you're going to get lung disease, is the best sort to have! :wink:

 

Of course, lung disease in scleroderma is quite serious; I was treated with very strong medication and will have to take immune suppressants and steroids (which come with their own side effects, most of which I've experienced) probably for the rest of my life. I wasn't (and still am not) particularly thrilled about that, but realised that I would have been very ill and possibly died without them, which does tend to concentrate the mind wonderfully. However, I consider that a small price to pay for my improvement in my lung disease and all the other unpleasant symptoms which are part of the disease.

 

As far as the prognosis for my lung disease goes, my treatment was very successful and my lung consultant has said that they could pull people in off the street with worse lung function tests than me! :wink::lol: Obviously, I don't have a crystal ball and can't predict the future, but I consider myself very fortunate in that because I was very fit at the time and my lung disease was diagnosed quickly and correctly, I anticipate a reasonable life span with this disease (barring my getting run over by a bus, or some such eventuality.)

 

As to staying positive, I'm afraid it's in my nature to be very upbeat, most of the time (the happy idiot, that's me!  :wink: ) The prednisolone tends to accentuate personality traits like that and I nearly drove my poor husband round the bend in the beginning, as the medication had me swinging off the chandeliers, although I have settled down with it now and the disease has stablised.

 

Although I do have an out of date first aid certificate and a fondness for telling my medical team how to do their job, I don't have any medical training. However, as I said in my previous post to you, I have done all the Googling and frightening myself about scleroderma in the beginning, but nowadays I do a lot of research for the ISN Newsroom, so I now know the difference between rubbish information and up to date and correct information, such as we provide. Unfortunately, with the internet, a little knowledge is a dangerous thing!!

 

Kind regards, 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Ashley,

 

Welcome to Sclero Forums.  I'm sorry you have worrisome blood test results and hope you have a good appointment with your next consultant.  In order to improve the odds of it being a useful meeting, I'd recommend that you seek out counseling ahead of time, and do everything you know to subdue the anxiety and panic attacks, such as taking your medication as prescribed, getting appropriate exercise, eating right, and challenging yourself to learn something new, that is not scleroderma-related.

 

A comforting idea for you to keep in mind is that about 20% of blood tests are just plain wrong. Your result may have been a mistake and you might never get that result again. If you find that thought discouraging, then you might actually be experiencing over-the-top excitement with the idea that you'll have a diagnosis and none of this was in your head, etc. I mention this because there is such a very fine line between anxiety and excitement that sometimes when I'm feeling anxious, I can just force a smile and then call the apparently same emotion excitement!

 

Of course, that's just a layman's stab at trying to quell the situation you're in. As you can tell, we certainly try to be helpful, but we are not mental health professionals. The guideline we all use is that if we are still upset, and not back to normal (with our attitude, diet, sleep, everything) within 2 weeks of learning of the prospect of a serious illness, then we really need to seek professional help. Support groups all naturally have severe limitations, and are only helpful once we are basically well-balanced.  And believe me, many of us have sought outside help to get on an even keel, even those of us who didn't suffer from anxiety or depression in the first place.

 

Bear in mind that your doctor will want to focus on the facts of your situation, so to participate properly in your care, as an adult, the responsibility lies with you to come to grips with things emotionally and to be able to rightfully assure them that you can handle both good news and bad.  The harsh reality is that the doctors often withhold a serious diagnosis if they feel a person cannot deal with it emotionally, because that would often be doing more harm than good.

 

I've talked to some people who thought that the doctor would diagnose them faster if they knew how upset they were about the prospect, and that crying or tantrums would help speed things up or encourage the doctor to take things more seriously, but exactly the opposite is true. The doctor is more likely to become focused on tamping down anxiety, which might lead to over-reassurance that they are physically fine and perhaps even over-attribution of symptoms as being only due to anxiety.  And really, if the anxiety isn't under the best possible control, you have to admit they might have a point, as anxiety can wreak all sorts of havoc with physical symptoms from head to toe.

 

But, by focusing on doing everything in your power, putting into action all that you know will help you stabilize emotionally, then you put yourself in a position to get your physical concerns promptly addressed.  One thing that sometimes helps me, when I'm tempted to worry-wart something, is the thought, what if I'm wrong, how foolish will I feel for having wasted all this time and energy and sleeplessness over NOTHING?  I dislike feeling foolish, so that tends to help me put it aside and sleep better.

 

Please pardon my frankness, but for fear of death, welcome to the human condition. Nobody gets out of this alive. It doesn't matter if it is scleroderma or cancer or heart disease or accident.  Therefore, I don't see that soothing your concerns about scleroderma will actually help in the least.  Should we manage to soothe those fears somehow, the same fear will just transfer to something else, like cancer or heart or whatever.  The bottom line is that most of us need to come to some sort of comforting idea about death, either through religious faith or logic; the logic being (if you are not religious) that then death is a nothingness. And if it's purely nothing, then what on earth do we have to be worried about?

 

A good counselor helps us face our bottom-most fears, not just live with them or medicate them away. I'm sorry that we can't be more help on the matter, but as you've already discovered with Dr. Google, scleroderma is usually not a walk in the park, but with the right attitude and support, we can get through it anyway, sometimes by trodding slowly, sometimes on tiptoe, or, like Jo, sometimes even merrily skipping...anyway!

 

:hug-group:


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.

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Hi Ashley, do be aware that CREST and limited Systemic Sclerosis do not result in mortality too much different to the norm unlike diffuse scleroderma where survival beyond 10 years is something like 50%.

 

Living a healthy lifestyle can improve your odds immensely.

 

I was diagnosed at 56 years of age, but I believe that I may have had Scleroderma mildly since childhood and almost certainly since I was in my 30's, when mobility issues first reared their head.

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Hey all,

I saw a scleroderma specialist yesterday; he was on the list of scleroderma specialists in the U.K. and told me he's involved in the UK scleroderma study and research group and specializes in connective tissues diseases. He was lovely and very patient. He said that I do not have Scleroderma. He checked my nail beds and said they were "perfectly normal". He said my cold hands and feets are not Raynaud's if they have no color change. And he referred me to get my lungs and heart checked just to reassure me (I'm not sure when I'll have them checked). He also took a lot more bloods.

He was made aware of my body pains and acid reflux / IBS symptoms but kept reassuring me and sent me on my way.

However I forgot to show him the tiny red dots on my lip, I have four. One is much bigger than the rest and my general practitioner told me it was a dilated blood vessel. So I'm automatically assuming it's Telangiectasia. So now I'm freaking out.

Basically he told me I do not have Scleroderma because my nail beds are fine and I have no Raynaud's. He said my centromere antibodies could be negative in the future. But he also said the lab runs very accurate tests and only reports moderately high - high levels of antibodies (so that means I obviously didn't have a low titer). He said I could possibly develop the disease in the future, but it's very unlikely.

But I've read countless medical papers saying that ACA does not exist in healthy people. That and my vague symptoms, along with what I believe are Telangiectasia on my lip. I just don't see how I don't have limited Scleroderma. I'm terrified to get my lungs and heart checked. And I'm kicking myself for forgetting to show him my lips.

Should I trust him and his word though?

What do you think?

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Hi Ashley,

 

Well, it's possible that he might have a little bit more experience in diagnosing scleroderma, than either you or I.  It's totally fabulous that your nail beds are clear and that you don't have Raynaud's! 

 

Get the heart and lung testing done, whenever they schedule it and wait for the rest of the blood test results, too.  If after all that is completed you still doubt your doctor's expertise or conclusions, you could always get a second opinion if there is a sound medical basis for it.

 

It's quite possible to have telangiectasia without having scleroderma, in fact, nearly any symptom of scleroderma can be part of another illness or occur in otherwise perfectly healthy people.  That is why diagnosis requires a combination of various symptoms and test results, and why some symptoms, like skin tightness and pulmonary fibrosis, carry a lot more weight than others.

 

While you're waiting, please rely on your counselor for help to see you through, as none of us are capable of virtual diagnosis, nor can we provide enough assurance to assuage health-related anxiety.  This is a great time to learn some new coping skills, while you wait on tests and more test results!  Building up your resilience surely will help you, whether you pass or flunk your next round of tests.

 

:hug-group:


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.

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Hi Ashley,

 

I should add that it would be a great idea to seek counseling for being "terrified" of getting your heart and lungs checked.  This entails entirely painless and harmless tests that are extremely common.  The fact that your doctor ordered them means next to nothing, as they typically order the tests to get a baseline, which is helpful, often many years later, to figure out if there has been any silent or significant disease progression.

 

It's not the least bit normal to be terrified of regular, everyday medical tests, regardless of whether you are healthy or sick.  The odds are tremendous that your test results will be perfectly normal.  To have an exaggerated fear is called a "phobia".  Phobias can be very quickly and easily remedied through very simple counseling procedures.  Of course, maybe you were just being a bit emotional or dramatic at the moment and don't actually harbor a phobia over this.  If you do think you might be on the phobia end of things, it's a great idea to address it head on with your counselor.

 

Sadly, some people let their fears rule the day. It causes them to skip recommended preventative medical or dental care, in which case the phobia turns out to be life-threatening.  It's entirely unnecessary to live with exaggerated fears, and there are very simple, easily taught and easily learned techniques for overcoming them.  It's not a long, involved, difficult, or even frightening process.

 

Please let us know when you've succeeded in having your tests completed.  And perhaps you can also then help others here by letting them know how you managed to overcome frights and fears or phobias to deal realistically with health issues.

 

:hug-group:


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.

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Hi Ashley ,

 

As I said before, my son had all the positive blood work and esophageal dismotility when first diagnosed.  He did not have nail fold capillary irregularities, skin hardening,  or Raynauld's at the time.  The specialist said he didn't have scleroderma but labeled him with UCTD  (Undifferentiated Connective Tissue disease).  That being said, he still has issues internally.  His hands and feet blanch out completely white, but not individual fingers/toes, hence, no diagnosis of Raynauld's.  He has red blood spots on his chest, but that is a common site for anyone to have them.  I guess what I'm trying to say is that the diagnosis of scleroderma is very specific, with guidelines the doctors follow.  Having UCTD does not diminish the severity of Gareth's issues over someone with the diagnosis of scleroderma.  Does that make sense?  He was put on Plaquenil and an anti-depressant at the start and, after 3 months, his esophagus softened up and he was feeling pretty good.

 

Over the past 10 years, he has had his ups and downs with medical issues, but he's living life and enjoying it.  There are many chronic illnesses that one can carry through life - how you deal with it can make a world of difference for your mental health.  Please, take a deep breathe and follow the doctors advice.  Everyone here is ready to offer useful advice, too.

 

Take care, Everyone.

Margaret

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