So I'm going to make this as short as possible. Autoimmune disease runs in my family (both sides) all Lupus. So every year I would get an ANA panel done. It was always negative until 2 years ago, then it came back positive 1:160. I had ZERO symptoms and the doc I was seeing at that time said not to worry and left it at that. Well here I am, 8 months ago I got what I thought was food poisoning and it never went away. I tested positive for small intestinal bacterial growth (SIBO) and thought okay this is my issue. Still in the back of my mind I was worried about the elevated ANA. I just got all (major blood work done) and my doc found elevated ANA and centromere antibodies. He made it known that he suspected CREST (or Limited) and now wants to check my organs, etc. However, he thinks everything looks good (minus digestive issues, nothing with swallowing though).
My question is that I'm a little confused and of course the internet is the worst place to look! I literally scared myself half to death and have been crying for days. My doctor seemed very positive about it and told me that I will live a long life and that my symptoms will come on over time (if they do) and will be manageable? He also found a chronic bacterial infection (mycoplasma) and will be treating that. He thinks that may be causing most of the symptoms I'm feeling at the moment (minus digestion). I'm having brain fog, aches, weird numbness on my back and leg. The bacteria he found is similar to Lymes but easier to treat. But I don't have any CREST symptoms yet. My feet get cold but nothing crazy! I'm scared, I wrote an email to my doc today after spending an entire day researching, etc. Any help would be appreciated!! I'm only 27 years old and to me, I feel like my world is ending. My main question is I know Limited is a milder form but does it ever turn into diffuse? I guess I just want to know what I'm dealing with. I want to have kids, live my life, etc. I see so many conflicting things. Some say CREST is mild and manageable and other things say it's a death sentence. Please help! This is so crazy
Confused and scared!
Posted 23 January 2015 - 03:06 PM
Posted 23 January 2015 - 06:29 PM
Welcome to the forums, you have come to the right place to get good reliable advice and comfort. We here are not in the business of frightening you but there are issues to be faced in a sensible and mindful way.
First of all our advice is to get yourself to a Scleroderma Expert. Obviously your current Rheumatologist is doing a good job but unless he is an Expert there will be things you could possibly get better advice and treatment for.
For the record I personally have had Limited Systemic Sclerosis since I was 22 years of age. I was 22 when the first symptoms of Raynaud's Phenomenon showed up but in fact on reflection and in the opinion of some Doctors I have probably been brewing this thing since I was about 11 or 12 years of age.
I am now pushing 71 years. My birthday is in a couple of weeks time and I intend to celebrate it as best I can. It has not been a particularly easy ride but as far as I was aware during most of those years there was nothing wrong with me except my imagination :emoticon-dont-know: I had some internal issues including bowel prolapse and difficulty swallowing which started in my 40's but by then I had a couple of kids and was doing all the usual suburban family things. I was diagnosed in 2003 when I was 59 and my disease started really impacting my life. Even then it has really only been the last 3 years that have been difficult for me.
Just because I have had a reasonably easy time of it doesn't mean you or anybody else will have the same story, but I am giving you another side to something that can be very scary. Some people start straight in with major skin issues and others don't. You are lucky in that you are at the start of things right now and the wonders of modern medicine are there in front of you to help you. The important thing is to get the best advice and treatment there is and make up your mind to minimise the effect this disease will have on your life.
Keep posting and letting us know how you are getting on and we will be here to support you.
from the upside down side of the world
Posted 23 January 2015 - 09:20 PM
It's so great to hear your story. I'm sorry the last 3 years have been rough for you :(
It's really hard for me right now to wrap my mind around all this. Also with the conflicting views and things I have read on the Internet (I know, so bad!) it has just made me so scared. I know the best thing to do is to speak to people like you and wait and hear from my doctor.
Do you feel like this is something manageable? I'm sure there are bad and good days but right now I just feel like I'm in a black hole :(
Thanks for all your advice!
Posted 23 January 2015 - 11:56 PM
Welcome to these forums!
I'm sorry to hear that you've been suffering with unpleasant symptoms and it must be extra worrying for you as you have a family history of autoimmune diseases.
I have Limited Scleroderma for the last five and a half years and whilst I'm not ecstatic over having this disease, I've found that it is perfectly possible to have a full and enjoyable life in spite of it. In fact, in some ways, I've gained a lot through joining these forums and getting to know the most wonderful people. Certainly, trawling the internet for information is not necessarily the best thing to do (been there - done that and scared myself witless in the process! ;) )
Judy makes some very valid points in her post and I would fully agree with her, especially about consulting a Scleroderma expert. She is also correct in saying that this bizarre disease affects everyone differently and it is therefore impossible to predict how it will pan out for you. You may never develop any more symptoms (having positive antibodies is no guarantee that you will go on to suffer full blown Scleroderma and vice versa).
We have comprehensive Medical pages, with a wealth of up to date and accurate knowledge (we don't do scary, alarmist theories! ^_^ ) and I hope that now you've found our forums and joined our community, you'll be able to relax a little more and feel comforted.
Here's a welcoming :emoticons-group-hug: for you!
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Posted 24 January 2015 - 12:06 AM
Nobody, and particularly those of us here who are not medically trained, can tell you what might happen in the future. All we can do is hope that your journey will be a gentler one.
There are things we can say though, and one of them is that worrying won't help and in fact will probably make you feel worse. Worrying can rob you of sleep and of enjoying the lovely days that are in your future. You need to learn to enjoy the good days and face the bad days when and if they come along.
In the meantime, while you are practising doing that, make plans to get yourself to a centre of Excellence specialising in Scleroderma and get the best help that you can. You haven't said where you live so I am presuming you are in the US or UK where such practitioners are available. You need to talk to somebody who will take you seriously and help you to cope.
Posted 24 January 2015 - 01:30 PM
I see him again in one week and then we start treatment, currently I feel like I have lyme (symptoms wise) and it's horrible and scary. I'm scared to go into treatment for it and and also suffering from SIBO (bacterial overgrowth). I guess you could say I'm a little overwhelmed. One day I was fine and the next I was sick with all these things happening in my body. I appreciate all your feedback! :)
Like I said my doctor is positive about it. He says within 4 months I should have zero/minimal symptoms and by 12 months the bacteria should be gone. I'm guessing he knows exactly what to do for the elevated ANA but we aren't talking about that until next time. I'm glad to have a place to talk :)
Posted 24 January 2015 - 04:27 PM
<<I'm sure there are bad and good days but right now I just feel like I'm in a black hole :(>>
This caught my eye....any autoimmune disease that attacks the body can also affect the brain chemistry. Depression is common in many autoimmune diseases....please, don't hesitate to ask for help if you need it. You're not alone in that category!! :(
You're close to my son's age....he'll be 27 in May. His autoimmune issues started at age 18, with + blood work for Scleroderma, severe fatigue, chostrochondritis, hardening of vocal cords, depression, and full esophageal dismotility. The Scleroderma expert said no to Scleroderma since he had no skin issues, no Raynaud's, or other issues related to Scleroderma. His dx was UCTD. He was put on Plaquenil and he improved quite a bit. He still has esophageal dismotility on the lower 1/3 of his esophagus and it needs to be stretched every 12-18 months. He was put on Lexapro for the severe depression and that helped. He has developed mild Raynaud's' and SICCA over the years....nothing severe, though.
This site has been a life saver for many of us. The medical information is up to date, informative, and correct.....unlike the depressing, my-son-is-going-to-die-soon, information that I read on the web before landing here!! :emoticons-yes: Goodness....it's been over 8 yrs now and he's still around enjoying life!!
Take care and keep us all posted on your health,
Mom to Gareth, 26 years old, DS/ASD
Posted 26 January 2015 - 01:15 PM
Welcome to the forums! I'm sorry to hear of your diagnosis. It can all be so confusing and overwhelming at the beginning. So take one day at a time.
Jo provided you with several excellent links, I do hope you find them helpful.
You've come to the right place for accurate knowledge, support and friendship. Deep breath!