Doing AWFUL - made rheumatologist appt. Support desperately needed!

[myWorldofWorry]

I know this is long, but I just have to share my story --- I'm in a terrible state. Please, please, please, if anyone can read it and offer support, I need it as bad as ever right now. Thanks for listening.

These past few days, my anxiety has been THROUGH THE ROOF. I can't concentrate on anything except my fear of disease. In short, I'm worried that I have a rare kind of scleroderma (an already rare connective tissue disease). I've had this fear day in and out for the last 3 years, and it's at its peak right now.

Scleroderma literally means "hardening of the skin." Apparently, more than 95 percent of cases involve this symptom. Do I have skin hardening? No. But scleroderma can also affect internal organs. It can cause the muscles in the digestive tract to harden and slow down, leading to bloating and small intestine bacterial overgrowth. Two years ago, I tested positive for a bacterial overgrowth after years of chronic bloating. Scleroderma can also harden the lungs. Apparently many people with scleroderma show a low/abnormal "diffusion capacity" on pulmonary function tests. Great - just the part I scored abnormal on when I had pulmonary function tests back in 2004. Oh, and pretty much everyone w/ scleroderma also has Raynaud's, and I appear to have a mild case of that, although it's questionable because it is so mild.

Now, I should stress again, almost all people with scleroderma-related organ damage also have the skin symptoms characteristic of scleroderma, which I do not. But there is a very rare form of scleroderma that does not affect the skin --- just the insides. The incidence rate is around a handful of people per one million. So it would be like winning a really bad lottery.

There are no perfect tests for scleroderma. The test most likely to be positive is an ANA, which can be positive for any number of different reasons. I've had 3 ANA tests, most recently in late 2011. Each time, the results have been negative. I've also had inflammation levels checked, and they're always normal.

I went to my family doctor yesterday in a panic. She said that since I had a negative ANA seven years after my symptoms started, then I can be sure it's not scleroderma. She has had 3 patients with this disease, and she's worked with specialists at university hospitals to coordinate their treatment. My doc said that she was told that pretty much all cases have positive antibodies after around 3 years. But I've read such differing things online. Some sites say that 95% of scleroderma patients have a positive ANA. Many other sites say it's as low as 50 to 80 percent. So that leaves room for plenty for doubt. I even found a post on this forum from a woman whose mother died of scleroderma, and she said her mom never tested positive, even when she was at her worst. Scary!

I fully realize that scleroderma w/out skin involvement is an extremely rare disease. And I realize that I have a history of worrying about worst case scenarios. But there are things here that I just can't get over --- like the bacterial overgrowth and the low lung test score and the Rayndaud's. Too much to be a coincidence?

I feel like I'm going to go off the deep end. I'm a mess! I can hardly look at my 3-year-old daughter without crying, for fear that I have a terrible illness that is going to take me away from her. Oh, and I'm also pregnant and can't even enjoy it.

I've been too scared to go to a rheumatologist all these years --- and I've not wanted to put myself through that if it's just health anxiety. But I am living in a terrible limbo right now and feel like I have to do something. I found a local rheumatologist who was reviewed online as being really compassionate. So I bit the bullet and called today. To my surprise, she can see me in less than a week. Not knowing what else to do, I scheduled the appointment.

I am so scared and wondering whether I made the right decision. I can only hope this turns out well. Any words of support are so very much appreciated. I just want to get through this and focus on all the things that are important to me in my life.

[MTBR]

I COMPLETELY feel your pain....I have been going through a similiar situation. My anxiety ramped back up about a month ago when my feet/toes started twitching....then it moved to my fingers, now it's here and there and everywhere!!!! Doc says I am fine...it's anxiety, but I can't seem to internalize that I have some control over this thing. Trust me when I say I REALLY understand your fear. I have the same thoughts when I look at my 5 year old.  And for what it's worth, one of my best friend's wife has Scleraderma....and she does GREAT....leads pretty much a normal life.

You're gonna be fine....close your eyes and do some breathing excercises, or even better...go play with your little girl!!!

[Echo Hotel]

Hey there;

I think you should go to a rheumatologist and they will tell you with certainty that you do not have scleroderma. I know seeing a specialist is scary, but in your case I think you need to break up this 3 year long cycle of what if's.

You do not have scleroderma. I think it's easy to imagine that minor symptoms could reflect a major disease when you haven't ever actually seen a person with that particular disease. People who actually have it, particularly this form of scleroderma that you're worried about, don't have general or vague complaints and they are usually not hard to diagnose. If you've worried about it for 3 years, and haven't experienced any degeneration of organs in your body, like your kidneys, for example, then you can be assured that you don't have this!

Because you have a 3 year old child and these symptoms started 3 years ago, you have to consider that some of your anxiety and symptoms were brought on by childbirth. And these fears are certainly worse a lot of the time for women with young children, because of the fear you described about leaving a young child without a mother. I also have a young child who is 4, and I totally understand this. But don't spend their childhood years worrying all the time! You'll never get them back. I myself have been guilty of letting my anxiety take me away from being fully present with my son.

You don't have scleroderma. You really don't. I hope you get to feeling better 

[greend]

I am sorry you are so upset.  Believe me I've been there and it is awful.  Your anxiety is really getting the best of you. 

The points your doctor made make sense.  If your ANA was fine in 2011 it sounds like you are barking up the wrong tree with this schleroderma stuff. I think you have to trust your doctor, and people with HA (including me) have a difficult time doing this.  You have been suffering with this insecurity for so long that maybe a trip to this rheumatologist isn't a bad idea. I am sure they've seen all the inflammatory diseases out there and will be able to put your mind at ease.  The chance of you having schleroderma seems almost non-existent from what you've said.

Try and do things for your anxiety - like going out for walks, reading self help books  and maybe seeing a therapist might not hurt either.  Some how you have to get control. 

Are you doing anything for your anxiety right now?

Hugs to you and I hope you feel better soon.  Let us know how everything works out.

[myWorldofWorry]

Thank you soooo much for the replies. I am beyond grateful. It helps to hear that you think I don't have scleroderma, because somehow to me it seems so much like I do.

I haven't known who to turn to in this terrible state of anxiety. It means so much that you're there for me.

Until the other day, I hadn't Googled about scleroderma in years. Then all that went out the window. Now I'm reading about symptoms, test results, prevalance, prognosis and so on. And I know I have got to stop. Even worse than the medical sites are the forums. That's where I read people saying that they have scleroderma despite negative tests, or that they have scleroderma and no symptoms. Someone even posted that they have neuropathy, and this freaked me out since I do - but I have never read on a medical site of that being a symptom of scleroderma. But now they seem connected.

I feel like I could puke.

[vardnas]

I just replied to your other post, but I felt like I should say this, too.

So often, we hypos LOVE to fixate on EXTREMELY RARE diseases that are often HARD to diagnose. Do you really think that's an accident? We love to want reassurance and surety—we HATE the unknown—so it makes sense that we choose to fear these disease that can hardly ever be diagnosed for certain. And of course they're chronic/life threatening/incurable. Even better!

Look, I'm not ragging on you, but the likelihood you have this disease—with your MULTIPLE negative test results, is almost next to nothing. Practically, pretty-much, might as well be nothing. All the tests and all the doctors in the world are not going to convince you otherwise, not least because now you're reading online about all this conflicting information. But guess what? You are doing this to yourself. You COULD choose to accept your negative diagnosis and move on to address your problem of anxiety. Searching online, going to the doctors, submitting to more and more tests—these things will not help you, sad to say.

[sixpack]

those who CHOOSE to lurk or join or obsessively look at disease forums are bound to find themselves in a pit of dispair.   it is all of their own making.

just think of how much better off you would be if you would accept actual doctors that have seen you and the actual med tests you've had saying that you don't have any of the inflammation markers on bloodtests.  Rather than eyes wide open googling to disease forums.


you made a rheumy appt what is the rheumy going to do?  the rheumy will or may run the same ole tests the other docs did and come up with the same results.  are you going to believe this doc?  or are you going to go back and listen to all of the horror stories you find on disease forums.   to which I am convinced often peeps on them are suffering from ha themselves.

my daughter had abnormal ana, esr and one or two other bloods.  the ped sent her to a rheumy cuz she knew that wasn't right.  the rheumy agreed.... the difference here is that my daughter's bloods were abnormal, the FIRST time.  yours haven't been abnormal.

all of this 'what if" and looking at your 3yr old and crying...............  typical of a person engaging in fautly thinking.

[myWorldofWorry]

I know. I agree - Googling diseases always results in increased anxiety. So, why did I do it? I can't really say what snapped in me. I managed to avoid Googling for three years, and then, bam, it all went out the window one high-anxiety day. And now I'm even worse, and I wish I could take it back, but I can't. Can't people sometimes slip up? Fall off the wagon? I'm not perfect. I made a mistake. Yes, I regret it. I think most of us have been there.

A few days ago I called a counseling center, and I am waiting for a call back. I was seeing a great psychologist there, but she left the practice to teach at a university. I didn't get in with a new one, and now I want to. I've seen some not-so-great therapists over the years and was bummed when the really good one left. I figured I wouldn't find someone like her again. But I have to try.

In going to the rheumatologist's, I am keeping in mind I don't want to put myself through any unnecessary tests solely for reassurance. If she thinks I need something, that's one thing, but I don't want to open up any more of a can of wormsif I don't need to. I am sure many people may feel that I am taking the wrong step by going. Maybe I am. All I know is that I am in a terrible state. In my mind, scleroderma is a REAL possibility, even if it seems ridiculous to outsiders. That is just where I am at this point. Sorry if I am not as far along in the health anxiety recovery phase as some of you. A few months ago, a psychiatrist told me she thought I should see a rheumy just to address my fears of scleroderma, but I just haven't been able to go through w/ it. I guess now I'm going to bite the bullet. Maybe it's not the right choice. I don't know. I just feel like I am living in limbo now, and it's HELL.

[MTBR]

So often, we hypos LOVE to fixate on EXTREMELY RARE diseases that are often HARD to diagnose. Do you really think that's an accident? We love to want reassurance and surety—we HATE the unknown—so it makes sense that we choose to fear these disease that can hardly ever be diagnosed for certain. And of course they're chronic/life threatening/incurable. Even better!

This is an extremely insightful observation, and REALLY worthy of further and deeper review....good stuff.

[myWorldofWorry]

Agreed ---- my anxiety is very much centered around an inability to cope w/ uncertainty.