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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 piperpetpete

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Posted 23 May 2009 - 10:08 AM

First I have to say you guys are so strong and uplifting with a lot of your messages. I am in awe of all of you!

My story began in Jan. when I pulled a quad muscle....I am a long time runner (28) years and at the age of 53, I knew my time was coming with slowing down or having to stop running. I found out during the next couple of months that I had three bulging disks at L3,4, and 5. I figured that's when the pain and burning was coming from. In April, I was having issues with achy quads which one day turned into three days down in bed with burning pain from the back of my knees up to my shoulders and down my back. After the three days it stopped but I still had the pain behind my knees and several days of fatigue. I slowly started back walking and meanwhile went to a rheumatologist. She did intense blood work and found elevated SSc at 5.8. I already have one auto immune disease, ocular myasthenia gravis, which only effects the eyes, since 1989 and really other than double vision and occasional lid lag, not that big of a deal. Was in total remission for 8 years but it came back in 2004. This rheumatologist told me NOT to be concerned about this elevated levels unless I was having symptoms. Well, I have had Raynaud's since 1994 but it really isn't that bad....only in REALLY cold weather and once I have several pairs of gloves, it calms down. The 2nd rheumatologist made me get all baseline tests for kidneys, heart, lung and more blood work. I am scared about all this...and know after reading that SSc is the worst possible prognosis. Does every one with SSc -70 have limited time here or is there hope that it will calm down after the initial 3 to 5 year period? The second rheumatologist also said that just because you have the antibodies doesn't mean you will progress to full blown. What should I be looking for as symptoms and how do I live with this time bomb ticking away? Since I have had Raynaud's for that long does that mean I've had this for 14 years and didn't even know it? I am trying to live in the moment but it so hard. My husband is great and will definitely be there for me but I am driving him nuts with my anxiety about all this. Any thoughts you guys have will be greatly appreciated

Carol

#2 Jeannie McClelland

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Posted 23 May 2009 - 02:02 PM

Hi Carol,

Welcome to the Forum! We're a friendly bunch and totally understanding. Hopefully we can provide you with reliable information and reassurance.

We have another 'Newbie' who started a thread titled "How do you adjust to your diagnosis?" that has the one thing we all need to remind ourselves of from time to time: scleroderma is different for everybody. There are also some tips and some very good personal experiences.

It's not a death sentence. Just keep telling yourself that. It's true. You may never get any worse than where you are right now. It's hard to say how long you may have had 'it'. That's one of those questions that can drive you nuts. It's the one game I still play - the how long have I had it. I don't play the 'what if' game anymore. Why buy trouble?

Reading all the information out there can scare you witless. We have to remember that many articles, both scientific and otherwise, focus on things not going so well - who'd be interested in all the 'success' stories? :lol:

It sounds like your new rheumatologist is on the ball. She's gotten baseline data on all the important organ systems and I'd bet she repeats the tests on a regular basis, just to be sure of catching any developing complications early, and that's just the way you want it to be. IF you do develop a problem, early treatment is the key. Notice I said 'if' and not 'when'.

There are wonderful new treatments coming on line all the time and I'd be willing to bet there is more research happening now than at any time before and that's good news for us.

Best wishes and here's a welcome hug for you,
Jeannie McClelland
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#3 piperpetpete

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Posted 23 May 2009 - 02:41 PM

Thanks so much for your reply Jeanne, it means a lot. I will read the newbie article.

#4 jillatk

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Posted 24 May 2009 - 05:52 AM

Piperpetpete,
Welcome to the forums. Sorry you had to find us, but good for you that you did. I was diagnosed in Feb and had a similar reaction as you are describing. It really caught me off guard to get such a serious diagnosis when I was not feeling "sick." I have had a super active life and other than a few random, weird symptoms, I was feeling pretty good.

So the good news is this may be as bad as it ever gets. The best strategy is to keep getting out of bed and putting your feet on the floor and going. Folks on this forum are great at finding the things in life they can still enjoy and do, even when there is some loss of functioning. It sounds like you are already making some adjustments in terms of your running. Stay as active and engaged in life as you can just to spite the disease.

Jeannie gave you great words of wisdom. It is all about staying ahead of damage - get all the tests done and stay on top of any new symptom. Find a doctor who listens to you and will respond to any of your concerns. Surround yourself with supportive and loving people who can remind you about the reason for being.

It took me a good couple of weeks before the turmoil in my head slowed down a bit. It still sneaks up on me, but for the most part does not cause the sheer panic it did when I first got the diagnosis. Because you are working through the process and continuing to engage in life to the fullest, you will soon spend less time thinking about it.

Jill

#5 Lyn

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Posted 24 May 2009 - 07:00 AM

It took me about 6 months to calm down about my diagnosis. Every new thing that came up, or every recurrence of a symptom had me in a panic. Then I came to realize that what I had was moving in slow motion in my case, that maybe what symptoms I had were as bad as it was going to get. So every 6 months I see my doctor, every year I get my inner workings tested, and so far in 7 years nothing has changed. Scleroderma is different for everyone, and no one can tell you what will happen for you. Once you see what it is for you, you will get 'used' to it being a part of your life. Like I have seen here.. scleroderma is something you LIVE with.

#6 piperpetpete

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Posted 26 May 2009 - 05:08 AM

Hey Jill,Thanks for your response. At this time I can't determine if my symptoms are related or I am having anxiety attacks. I do feel tingling all over at times but I am known to being an extremely anxious person over all! I have had Raynaud's off and on for 14 years but its never been much of a problem. Right now I am on amtripline for nerve pain and depression I experienced last month and its helping quite a lot for the pain in the back of my knees but not the depression. I'm seeing a therapist also. I'm sleeping better but I am so scared of this and the unknown future. Testing elevated for -70SSc and it being the worst, well , you get the idea. I've really never been sick in my life much and I guess that's why I just don't know if I can deal with this outcome. I'm scared I'll be one of those who progresses quickly and there will be no hope. I'll finish up my baseline test in a couple of weeks and then see the 2nd rheumatologist in July. A long time to wait for more results, if things have started internally. I am so amazed at all the guys here on the forum and I wish I could view life in the same positive way all your guys. The more I read, the scarier I become. Thanks for letting me vent..... I have to add that I have the greatest husband around and I know he is doing everything in his power to help me but my depression is really effecting him.

#7 Sheryl

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Posted 26 May 2009 - 05:33 AM

Hi Carol and welcome to the Sclero Forums. Once you get used to the idea that you won't die in two or three months or two or three years or may be you will live 20 more years then you can will away some of the depression. Getting this diagnosis can put anyone in a real stupor. I couldn't concentrate for months. I finally decided that I was going to just live with it and grow old with it and most of the time I can even forget I have scleroderma. When something occurs you just go and get it taken care of just like everyone else in the world does. You are living with a few disease's that all of us here have so we can help you get over some of the hurdles. Ask away we will be glad to help you out.
Strength and Warmth,
Sheryl

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#8 piperpetpete

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Posted 26 May 2009 - 06:09 AM

Thanks Sheryl, I can use all the help emotionally you guys are giving!! I appreciate all the responses. I just don't know what lies ahead and it is really a terrible feeling.

#9 Jeannie McClelland

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Posted 26 May 2009 - 08:02 AM

Carol, the one thing you can absolutely count on is that we'll be here for you. We're even more certain than taxes. :)

As a Type A personality and one who always wants an answer to everything, to have a solid plan in place, to know what's coming and to be able to exercise control over it made it very difficult for me in the beginning. I wondered a lot if my doctor was keeping something from me. As I read more about scleroderma, I came to realize that my doctor (who is excellent) wasn't dodging my questions. He couldn't answer the unanswerable and he wasn't going to fob me off with platitudes either.

One good way to ease the anxiety is to become an informed patient (and here we've all been telling you to avoid information overload :lol: ) and 'partner' in your healthcare decisions. Having a good, pro-active rheumatologist is very important and just as important is one you can get along with. The same goes for any other specialists you might see sometime in the future.

You might also want to check out our page on Anxiety and Attitude. I still refer to it from time to time and in October I'll have had my diagnosis for 3 years. Anxiety is a natural reaction, but stress is bad for anyone, so you might also check out the section on Coping and sharpen up those skills. That's something you can do for yourself that will really pay dividends.

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#10 jillatk

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Posted 26 May 2009 - 04:59 PM

Carol,

Keep coming back for support, it will help and you will begin to feel better about this over time. A couple of thoughts come to my mind:

1. The severity of the numbers does not reflect the severity of the disease or the course of the disease. Case in point is myself - my numbers were off the chart, and I do mean off the chart. My doctor had not seen numbers that high (I win the prize) yet I have relatively few symptoms and certainly nothing that is life threatening at the moment.

2. If a medication is not working for you get in to see the right kind of doctor (e.g. psychiatrist) and get on a medication that will work better for you.

3. When you feel out of control and spun around go back to the basics - you are a runner and you know how to control your breath. That is in fact the best first place to start, control your breath, which then gives you control over your thoughts, and then your effect. When you are running a long distance you can't focus on the last mile you are going to run because it will defeat you before you even get through the first mile. You focus on the mile you are in, and maybe not even the mile you are in, sometimes the best you can do is focus on the 2 steps you are in. The way you survive and thrive with this illness is to focus on right now, don't get ahead of the disease and wear yourself out.

4. You can't live your life in fear. You could never allow yourself not to go for a run simply because there is a chance you could get hit by a car or attacked by a dog. The same is true living with Sclero - you can hide away from it hoping it won't kill you or you can charge right on through life in spite of it. Life is full of risks and rewards so embrace them both and chug right on down the path that you are on and enjoy every last second you have of it.

Jill

#11 ozzy69

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Posted 27 May 2009 - 03:23 AM

Hi Carol ,

Welcome! Everyone has given you great advice. It is a is hard when you first find out. It has been almost a year for me and sometimes my fears of the worst still bother me. It has gotten a lot better! I do stay very active with exercise and my boys and that has helped me tons. I do find I have to pay attention more to my body when I over do it. Having a great doctor really helps!

Many Hugs,
Nina

#12 piperpetpete

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Posted 27 May 2009 - 05:22 AM

Thanks all your guys for giving me a reality check. I am very lucky in that I have a wonderful husband (for 25 years) who would do anything in the world for me. That in itself, is very precious to me.
Right now, all I have is the slight pain behind my knees which could still be part of the 3 bulging disks in the lumbar area. I have decided that my running days are over. It was a great 28 year RUN, so to speak. I'm still lifting weights and walking. Once I can get this pain behind the knees to stop I will be back on my bike and the spinning one too.
I'm taking amitriptyline and that has helped immensely with my sleep and I guess too the pain behind the knees. I am trying to live in the moment but each morning when I wake, it's the first thought in my head and down I go! Usually, I'll get breakfast and head out with the dogs for a walk. That seems to help. I work just part time for our photography business and our son is in college so I have lots of free time to worry, but I will continue to work on LESS worry. Health issues have always been very important to me and I was a personal trainer for years. Part of me is so angry that this has happened to ME!! When I found out about the ocular myasthenia gravis back in 1989, it really wasn't that big of a deal. I just couldn't believe I would get ANOTHER rare auto immune disease! However, I realize that getting angry really doesn't do me any good so... My question for you guys is how bad were your first few years? I keep looking for symptoms and am driving myself crazy! I still have the lung baseline and chest x ray to do in the next couple weeks but then I'll be done till the appointment in July.

Carol

#13 ozzy69

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Posted 27 May 2009 - 08:16 AM

Hi Carol,

Getting angry was one of first respones. I use to run but had to stop because it causes pain in my bladder. My first year has not been as bad as I thought it would be. I have really bad Raynauds of hands, feet, knees, nose. I also have reflux, interstitial cystitis of the bladder, lots of joint pain and stiffness. I get really sore throat every 6 to 8 weeks or if I wear myself out too much. My hands started to swell more in the last 5 months. I have knots on the palm of my hands where some of my joints are. I also woke up about two weeks ago and could barely more my right pointer finger. It is more swollen. I have my lungs, and other tests done every 4 months. So far they have been ok. I get tested again in August. I have noticed changes over the year but nothing I can't deal with. My rheumatologist says I have diffuse scleroderma but is not 100% sure. I guess time will tell. I tried methotraxte for 12 weeks. It did not help with my joint pain or skin. My rheumatologist took me off it because I felt worse on it and I was having a lot of kidney pain.

I exercise at least three times a week. I do a dance fitness program. It is fun and easy on my joints. I do some yoga, but it is harder. I feel better the next day when I do yoga. I try to walk about three miles at least twice a week. I lift some weights but nothing too heavy. My exercise has helped me a lot. When I can't exercise I notice I get so stiff I can barely walk. If I sit for any period of time I get really stiff. My arms are stiff and hurt at night. I think the thing that scares me the most is not being able to exercise and hurting more.

I am 39 and the mother of three boys ages 16,18,20!!

Hugs,
Nina

#14 Shelley Ensz

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Posted 27 May 2009 - 02:51 PM

Hi Carol,

Welcome to Sclero Forums. I'm sorry you have scleroderma and send some extra warm hugs to you, and you can feel free to pass them on to your wonderful hubby.

Everyone has given excellent advice and ideas. All I'd have to add is that when I am faced with a very stressful situation, I try to find slogans that will help me over the hump and refocus my mind on something else.

For example, when I was trying to quit smoking, I focused on getting a kitten from the humane society if I went 3 weeks without a single puff. Our humane society puts excess animals to sleep. So I figured this way, if I took a single puff, a kitten would die for my selfishness. So, when I thought of smoking, I instantly thought of "dead kitty" and it stopped my brain from going any farther on the subject; and when I thought of not smoking, I thought of a wonderful, cuddly, "live kitty" which got me excited and my brain headed in the right direction.

One of the ways I comforted myself when I was first sick, was to repeat to myself that this was "no big deal" because "life is fatal for everyone." I know that sounds quite horrid, put to paper like this. But, Life itself is a terminal condition for all of us so scleroderma didn't make me any more special or any more liable to die than the condition I already had (Life). A few years before my diagnosis, one of my neighbors, who swam for an hour every day and was in the peak of health, was literally run over by a cement truck a block from home. So I also reassured myself that at least I was "still alive" and "not run over by a cement truck."

The actual phrases of what you find comforting will probably be very different. I just did what worked for me. But the key is to find one or two phrases that you can latch onto to bypass the anxiety and to put scleroderma -- and its threat to existence -- into a perspective that you can LIVE with, instead of stress out with. Life itself delivers so many stresses, that it really pays for us to do everything in our power to actively cope with stress, just as you are doing.

I don't think it's possible to really "get over" getting diagnosed with scleroderma, since it is an ongoing condition. But hanging around all these wonderful people who set great examples and give terrific ideas for making the best of a bad situation, really helps me a lot.

I took the liberty of giving you an avatar of lemonade, as you strike me as the sort of person who, when life hands you lemons, makes lemonade!
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#15 shennen0820

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Posted 03 June 2009 - 11:39 AM

I do have to say in the beginning of new diagnosis (July 2008) I too was doing tons of reading just like you are and I was also driving myself nuts. I have backed off a bit on the reading and research and I try to take one day at a time, one test and result at a time, and one doctors appointment at a time. Please do get educated but try to give yourself a break from all of the research and relax. Stress makes everything 100 times worse.
Shennen

#16 alice1

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Posted 04 June 2009 - 08:52 AM

Carol,

Sometimes things even get better. I am a 1000% better. My doctor put me on Cellcept and I am in remission. The joint pain and burning has gone away. I still get tired easily and tight in spots but life is good. I wish you well.

Alice

#17 shennen0820

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Posted 04 June 2009 - 02:59 PM

Alice how long have you been on the cellcept and how long ago were you diagnosed?
Shennen

#18 Honey

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Posted 07 June 2009 - 12:22 PM

Hello, Carol.

I am also a personal trainer and group fitness exercise instructor who at age 57 was diagnosed with diffused systemic scleroderma. With over 20 clients and 10 exercise classes per week, I am in awe as to where it came from. However, I was diagnosed with Raynaud's in 1994 as you were, but it was not really bad after I learned how to modify its attack on me.

I was diagnosed in February of this year, although my rheumatologist told me I had it just by seeing my feet and legs in January. The testing did not confirm it, however, as my anti-bodies are normal. But it has caused slight hypertension in the mitral valve. Heart rate has increased 30 bpm.

After 27 years in fitness, I am now just 94 pounds, but my faith is that of mountains. After the initial shock of being diseased, it is incredible how much love is given by others, who may never have been able otherwise to share it. I know that I will be able to share that love through this "bad time", and that makes all the difference. Support from your husband is so very necessary, and you can be strong for him, as he may be suffering more than you. I know mine is.

You may not be the person you used to be, but you are the same YOU. Your friends and family will adjust to the change and be so grateful for your life. May it bring happiness.

Kindest regards,
HONEY

#19 piperpetpete

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Posted 08 June 2009 - 05:19 AM

Thanks Honey, it was a treat to hear from another health nut that has a quirky immune system! Have you been able to continue your workout schedule? The only other problem I'm having is pain behind my knees and I've had to take time off from any kind of cardio. I don't even know if this is related. As of yet ,my rheumatologist hasn't diagnosed me. We've just seen the results of the ANA test.
I'm curious if the muscle pain I've had over the past six months is scleroderma and how I can get it to calm down so I can still do cardio. I still lift upper body and some light lower but that's all I can handle now. I still need to finish the baselines and will go back July 24th for results. My husband keeps telling me we don't have a definite diagnosis right now so just chill. And even if I do, he says we'll do everything possible to face it and fight hard. Yes, I did really luck out in the hubby department. My greatest fear is I won't be able to do all the active things we've always done. I hate to hold him back. All the thoughts about retirement and the things we've wanted to do are very active. Our whole family is like that.

Carol

#20 Honey

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Posted 08 June 2009 - 07:36 AM

Carol, thanks for your reply.

I have had to retire from personal training and all cardio and strength classes, but I am teaching 3 Gentle Yoga and 2 Line Dancing classes a week. I am very grateful I can continue those forms of exercise. I have contractures in all joints, which makes range of motion very small; especially in my knees, wrists and elbows.

I wouldn't be surprised if the trouble you are having now with muscles and joints isn't related to scleroderma, if that is what you are diagnosed with. My journey may have started with the Raynaud's in 1994, but a 18 months prior to the diagnosis, I had carpal tunnel in both hands. I was truly perplexed as to how I got it, but attributed it to using the tubing in one of my strength classes. I had surgery on my right hand and a few weeks later I had dental surgery. My dentist asked me if I had arthritis of the jaw after reviewing an x-ray, and I told him that I didn't. He said it was either arthritis or TMJ. I was astounded once again that I could have something else I didn't anticipate. I also started to feel tired and fatigued a lot, but I attributed it to "getting older." One good thing happened, however. The carpal tunnel in the left hand disappeared.

It was just a couple of months after the dental surgery that I had my first skin symptom. My feet started swelling and the skin was pigmented, warm and tender. It progressed to where I could hardly walk without pain all the time. Range of motion in my knees started to decrease and my grip never came back after the CT surgery in the right hand or even in the left. My knuckles were swollen before the CT, and never released.

My doctor told me that I needed to see a rheumatologist since it wasn't vascular or bone related. I did, and the rest is history. The scleroderma was manifested in my body as several different things before it started to aggressively attack me. It is amazing how your body will react to changes in itself. I was getting all sorts of reactions, and had no clue it would have been scleroderma until the changes in my joints and skin. I had learned of scleroderma after seeing a documentary several years ago. I was praying that I wouldn't have it, but my rheumatologist told me right away just from seeing how my feet and legs looked. Oh, that was heart-breaking.

Each day is a gift for me and my family. It put my life more into perspective, for sure. As far as living actively, you may still be able to. I am still teaching exercise and playing with my grand-daughter, the two things I love the most. Just take one day at a time...that's all you can handle anyway. Just be grateful for what you have, not what you may not have.

Kindest regards,
HONEY