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Newly diagnosed with diffuse but zero symptoms


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#1 Lynda9999

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Posted 09 November 2010 - 06:43 PM

Hello,

I am new to the forum but I have read a lot and learned a lot about Scleroderma (nasty piece of work).

I wanted to ask some questions because I can't find any answers anywhere in my research and I'm hoping someone can help. Please bear with my story.

I am a 46 yr old woman and always been very healthy. A month ago I felt a pain in my lower back in the muscle on one side. In two days it localized in that area but would spread across my lower back and in the mornings I would have severe spasming. Doctor put me on some strong muscle relaxants, pain blocker, pain medication and antinflammatory as well as sending me to physiotherapy.

After about 8 days, there was no improvement. Doctor ordered a blood test to see if there was other forms of arthritis. A back xray showed very mild arthritis in the L3 and L4 area. On about the 10th day all pain and spasms just disappeared.

I was happy the pain was gone, but the doctor phoned and said something showed up in my blood tests. He had ordered an ANA. The ANA was positive (650?) so the lab automatically did ENA? and anti-nuclear? tests. All showed positive to Scleroderma and further that it was diffuse.

I was in shock...still am. I show no symptoms of Scleroderma. Nothing. The doctor is sending me to a rheumatologist who is also a specialist in Scleroderma. I go in January. And of course my anxiety is out of this world.

Has anyone heard of this? Will it be likely that the specialist will order other tests and if so what might they be? Or will he just look at the tests and when he sees there are no symptoms showing just tell me to wait until something shows up?

My doctor says he is not the specialist but it just seems so odd that there are no symptoms. Is it possible to test positive (especially the diffuse type) and that you will definitely get the symptoms within a period of time? So in other words am I waiting for the sentence?

If anyone has any information or advice it would be greatly appreciated. I'm very scared. All of you are so brave, and wonderful to contribute to this site to help newly diagnosed and support networks.

Anything at all will help. Thank you.

Lynda

#2 Shelley Ensz

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Posted 10 November 2010 - 12:10 AM

Hi Lynda,

Here are some flowers to welcome you to Sclero Forums.

:flowers:
I'm sorry you have concerns about possible scleroderma. As it happens, it is possible to have positive bloodwork for scleroderma but not have the disease. That is why it is diagnosed based only on symptoms, and not by bloodwork alone.

However, you'll need the full exam by a scleroderma expert to be sure you don't have any symptoms at all, because some of them can be silent in the initial stages.

I can imagine how your anxiety must be through the roof. The guideline they give us is that if we haven't learned to manage our anxiety (or depression) within two weeks, that we should seek medical help for it. It can do more damage than any disease and ruin our quality of life totally. So we all need to learn how to live peacefully with both uncertainty and bad news. And it is a learnable skill that thankfully can help us is all area of our lives. No time like the present to tackle that project, eh? Learning more about scleroderma, hearing from our forum members who have positive bloodwork but no symptoms, will all help. And we expect you to be here to reach out to others who encounter this same phenomenon, as you can see firsthand how disruptive it can be.

I'm sending some extra warm hugs, just for you. I hope they make you feel a tad better! :emoticon-hug:
Warm Hugs,

Shelley Ensz
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#3 Jeannie McClelland

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Posted 10 November 2010 - 03:06 AM

Hi Lynda,

Welcome to the Forum!

It's awful to be given a diagnosis like that out of the blue and very, very scary. Not fair to patients, I say! However, getting to see a scleroderma expert so soon is absolutely wonderful. Of course I'm not a doctor, but I bet that you might hear something along the lines of: "You will probably never develop a clinical (symptomatic) case of scleroderma, but we'll run a few more tests and maybe keep an eye on you for a while. Of course, if anything does change, please feel free to call me."

Now, you'll have to tell us what happens in your appointment in January because I have a private bet on with myself about what the doctor says and if I win, I get a box of chocolate covered cherries. :lol:

Here's a little story (true) that should cheer you up. There once was a girl (about your age) who was diagnosed with systemic sclerosis. She thought this was the end of the world and that soon she would be very ill and have to give up everything she loved like hiking and climbing mountains. Think how happy this girl was when she found she could still do everything and more than she used to do and looks like continuing to be able to do it as long as there are mountains and forests and beautiful places in which to hike. True. Every word of it.

Warm hugs and very best wishes (and don't forget about my bet! I really want those chocolates!),
Jeannie McClelland
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#4 CraigR

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Posted 10 November 2010 - 03:34 AM

Shelley is quite correct about this disease being diagnosed by symptoms. Your doctor is seriously jumping the gun!

Scleroderma is so rare that most doctors may only see one or two cases in a lifetime. Even a rheumatologist may see fewer than ten. Thus they seldom rely on practical experience when dealing with the disease. Published examples of the disease are seldom useful because every case is different. I know about twenty scleroderma patients through a local support group, and no two have exactly the same symptoms! This why (in my opinion): 1. You must seek a scleroderma expert and: 2. You must "take over" the understanding of your disease. It usually isn't long before most of us realize that we know more about the disease than our doctor...

Your autoimmune issues, whether benign or otherwise, will be mystifying. You may want to be aware of the specific autoantibodies (the self destructive antibodies in autoimmune disease) that your tests indicate so that you can be aware of vulnerabilities. But as Shelley mentions, many people test positive but don't develop the disease.

I would suspect that you may have tested positive for the scl-70 antibody. It is said to be associated with some of the more severe cases of scleroderma and with potential lung involvement. I, however, test negative for scl-70, but have lung involvement. So, who knows?

Good luck,

Craig

#5 janey

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Posted 10 November 2010 - 04:48 AM

Lynda,
Welcome to the Sclero Forums. I hope the responses you have received thus far have eased your anxiety. It's obvious that your doctor didn't handle it very well. As Shelley pointed out, it is very possible to carry the scleroderma antibodies, but not actually have or ever get scleroderma. The ANA is an indicator that an autoimmune disease "may" exist. Other antibodies as well as genes do the same thing (possible, but not definite) - it all depends on what is active and what isn't active in those little cells of yours. These things can exist but lay dormant indefinitely. I was diagnosed strictly on my symptoms and the rate at which the symptoms had progressed over a short 8 month period. My initial blood work did indicate a positive ANA, but no specific blood work for scleroderma was done until 3 years later. With that blood work I tested positive for mixed connective tissue disease (which I do have), but I didn't have any of the scleroderma specific antibodies, showing that blood work results can go both ways. Not everyone with scleroderma tests positive for scleroderma antibodies and vice versa.

Please see a specialist if you have one in your area. If not, make sure that your rheumatologist has treated scleroderma patients. A doctor who is not familiar with scleroderma can go only by the book and as most of us with scleroderma know - scleroderma doesn't play by the book. Everyone is different and should therefore, be treated different.

Please keep us informed on how you are doing and your appointments with the rheumatologist. In the meantime, take a deep breath and move forward - Have fun and laughed a lot!
Janey Willis
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#6 Amanda Thorpe

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Posted 10 November 2010 - 05:03 AM

Hello Lynda

Welcome to the forums!

As has already been said blood work can be a bit of a red herring. I have scleroderma with heart involvement but according to my blood work there is nothing wrong with me, negative ANA etc. So the reverse is possible, blood work can say scleroderma without it ever developing.

Take care and keep posting.
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#7 scampie5

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Posted 10 November 2010 - 09:39 AM

Hi I was diagnosed 5 years ago with Scleroderma I have a over lap of both types and it was my Doctor that diagnosed it the specalist that she sent me to was very impressed and sent her a lettter thanking her for diagnosing me it saved a lot of time that would have been missed she also put me on steriods and changed me blood pressure pills to help protect my kidneys I am so grateful for her early diagnosis I belive it helped Lynn

#8 Sheryl

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Posted 10 November 2010 - 10:21 AM

Jeannie, that private bet you have with yourself hum! You could win the box of chocolates and get to eat them and we wouldn't know if you were on the money or not. If you don't tells us so we also know about this private bet, then just go buy that box of chocolates now and enjoy them. Ha!

Lynda, welcome aboard. Hopefully, it will be a long time before any more symptoms show up. I was told by one of my doctors when he was preparing to do an Endoscopy and Colonoscopy on me. That he thought I might have Scleroderma and he would want to see me in his office the following week to discuss it and my other test results. He kept pinching my skin and feeling my hands and fingers. I just wanted him to get on with his job and leave the rest of me alone. Ha! Anyways! It only took about 8 months for other symptoms to start developing. I had plenty of time to learn so much and arm myself with information.

This is for all the people still smoking. If you still smoke quit. By doing so you might possibly go into a form of remission. It worked for me, it can work for you.
Strength and Warmth,
Sheryl

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#9 Sweet

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Posted 10 November 2010 - 10:56 AM

Lynda,

Let me add my WARM welcome as well. You've come to the right place for answers, information and support! :flowers:
Warm and gentle hugs,

Pamela
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#10 enjoytheride

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Posted 10 November 2010 - 11:19 AM

Welcome Lynda- what everyone says is right on the money. You can have positive blood work and never have symptoms or negative blood work and have lot of them or anything in between. My doctor said that even having one symptom may not be enough- she was looking for three of them before she would say.
Then I went through the period of thinking the worst, being afraid and thinking I was all alone with this. Three years later (almost) I actually feel a lot better due to medications. But I know it can be a real scary time. Sometimes I look back and think how dark everything looked- but it wasn't anywhere near as bad as I thought.
Good luck with your specialist- that is certainly the right thing to do. Bonus points for having a good doctor to refer you.

#11 Lynda9999

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Posted 10 November 2010 - 08:18 PM

I am completely blown away by all of your positive replies. I wasn't expecting it and it helped me immensely. For the past week, I've had anxiety attacks and uncontrolled crying. I did realize though that I need to really understand the tests more than anything and how they work and what they mean. The second part was that I realized anxiety and stress would be very bad and my Dr also recognized this. I'm on an anti-depressant to stabilize and my Dr. has told me to come and see him weekly till I see the Scleroderma/Rheumatolist specialist. he's also said he'll sit and explain some new research and such.

Hearing from all of you was very warm...hugs back to you all. One of my friends has put me in touch with a friend of hers who was diagnosed with diffuse sclero 7 years ago and she would like to meet with me this weekend. I think this will also help....I'm still scared, but I know I have to calm down, allow people to support me and not keep thinking my life is over. Tough not to, but I have too. I"m lucky to have a supportive workplace both in benefits and flexibility....I will also start seeing a therapist to ensure I learn how to keep my anxiety down and be positive.

I would like to send you all a box of chocolates......just for your comments. But I will keep you updated....I actually have a feeling that the specialist will say "wait to see if symptoms show"....Is there tests though that I can ask for? Or I should expect?

thank you...and I have promised myself to read 10-20 pages of the posts each day and if I can throw my 2 cents in I will....Again, from the bottom of my heart...thank you.

#12 Joelf

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Posted 10 November 2010 - 08:47 PM

Hi Lynda

First of all a very warm welcome to the forum!

I can understand how worried and confused you're feeling at the moment but would agree with the other members that a positive blood test is not the be all and end all of your diagnosis. Scleroderma is such a complex disease and none of us seem to experience exactly the same symptoms or show the same blood test results.

I tested positive for the AntiPM/Ssc antibody but so far don't seem to have developed Polymyositis and hopefully I won't in the future. I'm not going to worry about it at present anyway! ;)

It is very confusing and to begin with, like you, I was very upset and anxious. However, once I was actually diagnosed and could understand the reason I had been feeling so awful, I began to accept it and even derived a certain amount of pleasure from googleing the results of my blood tests and looking at photos of 'speckled nucleolar' antibodies. (I think I'm probably a bit sad, though, and perhaps ought to get out more!! ;) :lol: )

Please don't worry yourself too much at this stage (easy to say, I know!) as you will probably find that a lot of your fears are unfounded. Do please post often and let us know what your rheumatologist says and I shall be thinking of you and looking forward to reading your future posts.

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#13 Sheryl

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Posted 10 November 2010 - 11:32 PM

Lynda, I received my box of chocolates. Thank You.

I was first told by my doctor that if I had Scleroderma I had better get my life in order. I had about 5 years left but I am still here, issues have totally slowed down and I hope to be here another 20 or more. Some doctors seem to scare the living daylights out of us for some reason. They also, don't always know much about this disease only possibly worst cases they read about in medical journals. You may carry the marker in your blood and nothing may ever happen. Some times something triggers it to start its attack on you. Limited Crest starts slowly and takes it time progressing. Diffuse is fast and aggressive and isn't as controllable, right off the bat. Do your reading, asking questions and relax if you can. This wasn't a terminal sentence of, you have only 3 months to live. You may have a lifetime. So go out and enjoy it.

Some of the tests that are baseline tests are your PFT's, Echo Cardiograms, Endoscopy's if you are having troubles swallowing, or have acid reflux. Colonoscopy if needed or you are having bowel issues. If you don't have any issues then most likely you won't need any tests right away. Doctors usually don't try to treat something that may not ever develop, they just try to help us with each situation that develops along the way. I hope you are starting to relax and understand that you will get through this and you will cope and wonder yourself how you let yourself get so out of control about this. We have all been there to some extreme. Some of us deal with it right away and get on with living others can't get out of the funk as readily. In due time we all figure out how to get on with loving and laughing and getting the most out of this life.

I still have over a half a box of my chocolates. Half full, not almost empty. It is how you choose to think. The best to you and others that are dealing with your new diagnosis'.
Strength and Warmth,
Sheryl

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