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#1 nata1979

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Posted 19 September 2009 - 02:51 AM

Hi everyone!

I'm almost dying of fright every day. I start my morning with reading articles about scleroderma and look at my body for new symptoms... and find it!

This story started with severe allergies, (2 months after I gave birth my 1-st baby), I went to the primary care and he ordered bunch of blood tests. It came back ANA positive (114, but interesting its not 100% positive, its like in the middle, because positive in that lab >120, negative <99) and SCL-70 2.5 (norm 0-0.9). And from that point I started to notice my SYMPTOMS.

-diarrhea (that actually went away with cipro), I lost some weight around 9-10 lbs.
- joint pain (its not symmetrical and might be because I was carrying the baby all the time)
-swollen salivary gland (under the tongue, left side, but ER said its not Sjogren's)
-patches on the trunk (2 and it look like skin went down a little bit and its not hard, skin there is usual)
- telangiectasia... these red spots on my body (maybe 10 tiny spots at all)
-sweating (but without moisture, just a smell, very different from what I had before)
- low grade fever (99F for 2 weeks, now I don't have it, sometimes flashes like only)
-heartburn (I took prilosec and it helped), now I can do without any meds but sometimes still have it

That's all. And my rheumatologist told me I better go to psychologist...Guys please help me. I can't now even live my life, I got scared to death.

And this ER doctor doesn't want to take a biopsy on my swollen gland just because he doesn't think it might be Sjogren's.

#2 Jeannie McClelland

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Posted 19 September 2009 - 04:29 AM

Hi Nata,

Welcome to the Forum. You don't say how long it's been since you began having symptoms, so I'm going to go ahead and say congratulations on the baby and any you may have had since. :)

Just to reassure you, even if you do have some form of scleroderma, it may never, ever, progress beyond what you are experiencing now. It doesn't have to, you know.

I'm not a doctor, of course, but there are a lot of different things that could be causing your symptoms besides scleroderma. Have you thought of maybe having a really thorough work-up with an internist? I think that's what I would do, then if my symptoms were continuing or new or worse ones appear, then I'd try and see a rheumatologist who specializes in autoimmune diseases (and maybe had some empathy with his patients <_< ).

It sounds like your symptoms are being treated adequately and that's usually the 'standard'. I don't think any responsible doctor would dream of starting you on immune system suppressants at this point~ You really wouldn't want them to, would you? Watchful waiting is the prudent course.

You'll probably have lots of people chiming in to tell you to stop reading the articles - all of us do go through a stage of cyberchondria! :D All that does is stress us out about things that we may never have. One of my good friends always says "Worrying is like buying insurance on a house you don't own."

Warm hugs and best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Shelley Ensz

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Posted 19 September 2009 - 05:28 AM

Dear Nata,

Welcome to Sclero Forums! I'm sorry it is because of concerns about scleroderma, but I am glad you have found us.

As it happens, it is necessary for many of us to go to psychiatrists. Anxiety, and anxiety over possible scleroderma, can be far more devastating and destroying of our happiness than the actual symptoms of scleroderma. In fact, if there really is concern over possible scleroderma, then it is even more important to learn how to ease and control stress than for the average person, because stress is sometimes implicated in either causing or worsening many autoimmune diseases.

Another thing that compounds the situation is that many symptoms of anxiety can be eased with proper treatment, so then our doctors can sort out the symptoms left over after our anxiety is under proper control. Until then, our doctors are very likely to chalk up ALL our symptoms as due to mental issues and there is no hope of any (physical) diagnosis.

The general rule of thumb for us all to follow is that if we are still thrown for a loop after two weeks of considering a possible adverse diagnosis, we should seek individual counseling to help us learn new techniques of coping with uncertainty of even the possibility of a dreadful illness. Believe it or not, some people have learned enough life coping skills to be a bit upset, but not out of their minds with worry, and they aren't jumping for joy over scleroderma, but at the same time they are not going crazy with worry over it, either.

Many of us have not had to develop such coping skills before, so we need a crash course in how to manage anxiety or depression or to learn how to take things gracefully in stride. Professional counselors can help teach us those things quickly, and sometimes medication is all that is needed to get us over the hump and back to our baseline "normal".

Although I'd dare say, many of us who have been down this path have undertaken to bring our coping skills to whole new heights, so that we wring a maximum amount of happiness and pleasure out of each and every minute. When life is truly precious, we learn how to refocus so that we can cuddle up to it and really live instead of just exist in mind-numbing routine or worse, in a simmering state of anxiety.

Doctors offering us to seek counseling or medication to help cope with the thought of serious illness is not absurd. In fact, they are doing us a disservice if they allow us to let emotions rule the day over physical ailments. Taking advantage of everything to put our lives on a better track is no sign of failure nor is it even a sign that it is "all in our mind"!

I hope you find some comfort and enlightenment along the way, and that your day today, Nata, is a little better than yesterday.
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.

#4 Margaret

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Posted 19 September 2009 - 05:52 AM

Hi Nata ,

Welcome to the group.

Like Shelley, I agree with the trip to the psychiatrist. With my own son, he suffered from autoimmune depression 3 months after first diagnosed. It's not something to mess around with. I was told by the psych doctor that the same autoimmune attacks on the rest of your body can affect your brain, too, and the seratonin levels. Also, if you are still considered post partum, that could be a second strike against your brain functioning normally. I don't mean to minimalize the rest of your symptoms and hope you find a good doctor to take care of you.

Take care, Everyone.
Margaret

#5 Shelley Ensz

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Posted 19 September 2009 - 09:07 AM

My I add a "yes, but" to that? Yes, but, when you go into the doctor to discuss this, it might be helpful to be as calm and level-headed about it as you can possibly manage, and also to take a good advocate with you. When we are overly-emotional, doctors seem to have a strong tendency to focus on the emotions/anxiety and how to control it, rather than on the issue at hand.

Since you'd rather have them focus on the issue at hand, select just that single issue for an appointment. You don't want to discuss anything else, just how to get your salivary gland fully evaluated. And bear in mind that millions of people have salivary gland problems that are not caused by cancer. I have had them so severe that I have been hospitalized several times for them, but due only to Sjogren's and not to cancer. Sometimes the ducts just get clogged, they can be drained, and then they are (usually) fine after that. That is totally a lay person's take on the subject, of course.

If your primary care doctor isn't able to handle it, you can ask for a referral to an ear-nose-throat (ENT) doctor. But I can't emphasize enough that, in my experience, doctors respond best to dealing with just the facts, without emotional stuff (crying, upset, worry, anxiety) mixed in with it. That is why seeing the psychiatrist can actually help aid in getting an accurate diagnosis, as you can then be able to have a more relaxed (but still determined) conversation with your doctor about symptoms and tests.

That is very hard for many people to do, especially for those who haven't been sick very much or who are still being thrown for a loop emotionally over the whole subject.

If your salivary gland has already gone back to normal, then this is all beside the point, of course. But do not ignore it if it is getting larger.
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.

#6 Elizabeth28

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Posted 19 September 2009 - 01:04 PM

Dear Nata,

I wanted to add my welcomes, too! I'm in a similar position to you, having tested positive for ANA and scl-70 last autumn, one year after having been hospitalized for an anaphylactic reaction to antibiotics. (My auto-antibody results, in fact, surfaced as 'positive' only after the reaction!) I was seen by a rheumatologist who specializes in scleroderma early this year, and after careful testing she said I'm free of the disease, though they will watch me carefully with annual checkups. She estimated my chance of developing scleroderma is only 1%; I've seen variable estimates from published studies that put the risk anywhere from 3-9%, but these are odds I can live with. Higher than those faced by the general population, to be sure, but as my dear quirky husband keeps reminding me, my latest blood test results show I have a higher chance of a heart-attack in the next 10 years! (Ah, the joys of black humour!) I've found a wide number of studies showing the incidence of scl-70 in healthy populations. The numbers vary by country; there's obviously a genetic component of all of this, in addition to possible environmental factors.

In the meantime, and probably like you are now, I'm having to re-evaluate how I think about my body, my life and how I handle stress, and also focus on the ways I am healthy today. Living in the present, and keeping things in perspective, is a crucial part of how we respond to the news we may develop scleroderma. As we all know, stress and anxiety can cause its own wide range of 'symptoms' - many of which you may notice pop up the moment you start worrying. I've taken up yoga when there's free time, meditation techniques (which have helped me so much) and have altered my diet. I found, in fact, that an anti-candida diet did wonders for my joint pain; a friend had suggested I try it after I was recovering from my hospitalization 2 years ago - in order to help remedy the side effects of prednisone - but it took me until this April to finally grit my teeth and do it! I'm glad I did now!

My suggestion is that you search the forum messages for 'scl70' to see how many other people have posted on this - those with or without scleroderma - so you have a better sense of the spectrum of possibility. Having scl-70 is not necessarily a guarantee anything will happen to you, and it's important to focus on this too. And curtailing your need for more information on scleroderma is important especially while you're suffering so much anxiety. I went through this need for info last fall, too, but I found it made my emotional situation worse. I learned what I could, and then put it away and focused on what WAS, not what MIGHT be. It doesn't always work, and there are days I lapse into fear again, but it's far easier to work my way out of it now.

It may also be worth looking at a recent posting showing pictures of telangiectasis - these are quite distinctive. I've got small red spots on my body, too, but have discovered that these aren't the same as telangiectasis. One less thing to worry about!

This forum is a life-saver, so I'm glad you found everyone here!
Best wishes,
Elizabeth

#7 Snowbird

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Posted 19 September 2009 - 03:23 PM

Hi Nata

Welcome. We've pretty much all been where you are...done that, etc. The best thing you can likely do for yourself just now that I would personally recommend is to stop reading anything and everything (especially if you're on the net, did that, not so good)...I'm thinking you're in overload drive now...which leads to anxiety which leads to no sleep which doubles the anxiety and so on and so on...then your mind runs away with you...not good for anyone with or without an illness/symptoms no matter what is causing them ;) . I know it's really hard to do when you're so scared, but do the best you can...one thing at a time, one day at a time, you can do it.

You are already on step one...because you have found the place to be and to ask all your questions here....you'll get all the factual information you'll need, you'll see :) .

Do you mind if I ask?

Is your rheumatologist a scleroderma expert? If not, the ISN Team here are wonderful and are able to provide you with a listing either in or closest to your geographical area to help you find one.

....and did your rheumatologist actually diagnose you with scleroderma? I may have missed it in your thread...or are you scared by the bloodwork from your primary physicians report? I'm no doctor but as far as I know bloodwork alone is not enough to diagnose scleroderma...and as the others said, sometimes things never progress past that stage. Take care and hope you keep us updated.
Sending good wishes your way!

#8 enjoytheride

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Posted 19 September 2009 - 05:22 PM

This is from the Queen of Denial here so take it for what it's worth. I look up something then give it a few days break. The first night I get worried and upset but then a couple of days later, I'm back to baseline again.

Information is necessary and this is a great source but a little at a time might help you digest it before it overwhelms you. Remember, that especially the medical articles are written about the worse cases- what researcher is going to get excited over a minor case of anything. Won't make his name go up in lights to say "Mild case of whatever is responding well to usual treatment."

Today was a great day for me- I woke up happy, got some work done, drove over a gallon paint can with the brand new tires I got yesterday and none of the paint leaked out at all even though it was about 2 inches high on one side and 8 on the other and the tire was fine, and I watched a movie that was always a favorite and made one of my favorite things for dinner- just a plain , uneventful, good day.

You'll have then too as soon as you let them come.

Hugs for you.

#9 nata1979

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Posted 20 September 2009 - 12:42 PM

Hi guys! Thank you all sooo much for reading and answering. I'm so happy I find you. Thank for your advice and understanding.

If any of you have red spots on the tongue, how does it feel like? Today I notice I have spots on my tongue close to throat and it feels like little bumps. I've searched for red spots due to sclero pictures but nothing.
Tomorrow I'm going to ER doctor for the follow up appointment....hope he'll take a biopsy..

And how does it feel if you have dry mouth and dry eyes? Guys can you please describe your sensation so I can compare with mine.

Snowbird, I'm not sure if my rheumatologist is a sclero expert, just a regular one I'm pretty sure. And I wasn't diagnosed with any autoimmune disease yet, all I have is my blood test and symptoms every day new. :(

My salivary gland didn't change its size since I noticed it a month ago.

I was so healthy and nobody in my family has any autoimmune disease. What's going on with me and why...