dimarzio

Rheumatologist Answers.

48 posts in this topic

Here are some statements made by my rheumatologist:

What is systemic Sclerosis?

It eats away at your connective tissue.

How did I get it?

Nobody knows, but if you fire enough bullets at it, one will hit the target.

Does that mean I will die an agonising death?

Well everyone has to die of something.

How long do you think I have left?

No idea as it affects everyone differently.

Is it a terminal disease?.

No, it is only Limited Systemic Sclerosis; it's not going to kill you.

Should I see a Scleroderma specialist?

No. I've been a Rheumatologist for 25 years, so I know what I'm talking about.

In response to various questions I have raised based upon the research I have conducted.

You shouldn't read the Scleroderma forums because they are completely irrelevant to you as you only have Limited Systemic Sclerosis, which is only a mild form of the disease and is unlikely to kill you.

In my experience, very few people with the limited form of the disease go on to get the diffuse form.

Would anyone like to comment on this?

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Hi Dimarzio,

 

I would echo Sweet's sentiment.

 

This is really why we do recommend that our members consult a listed scleroderma expert, rather than going to any old rheumatologist (especially one such as this, with a large ego to overcome. :wink:)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Dimarzio,

 

Well, I'd be a bit hesitant to return to a doctor who just wants to "fire enough bullets"!

 

And, I'd be off to see a real expert, myself.

 

Perhaps that wouldn't change your treatment plan at all, but it would certainly help me sleep better! :wink:

 

:hug-group:


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.

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Dimarzio,

 

Sounds just like the responses I have been getting most of my life.

 

You did miss the best one though - "you could try harder.   There is no reason why you can't start to achieve more".

 

Unlike those of you who live in other countries I have no recourse to an Expert.   There are none here and not one of the Rheumatologists I have been assigned  to has any real idea what they are talking about.

 

Judyt

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Dimarzio,

 

I'm so sorry about the responses you've gotten from your doctor. I've heard the same thing about the limited not turning to diffuse and also being unlikely to kill me. I get the feeling my doctor thinks I'm a bit of a simpleton. However, since I am just starting out with my baseline testing I am stuck with him until I get it all sorted.

Hopefully you will be able to find better care soon. I'll be thinking of you.

SoulDancer <><

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Here is another quote.  When I asked him, in his experience, what is his prognosis? He replied (and all of these quotes are verbatim), "if you were going to die at 65 before my diagnosis, then you will die at 65 and if you were going to die at 75 before my diagnosis, then you will die at 75".

 

I'm not quite sure what he is trying to tell me here - or is it what he is not trying to tell me?

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The worst thing for me though is that based on these comments, my wife thinks that Scleroderma is akin to a bit of a cold and has been going around telling my entire family and friends that I am making a meal of a minor ailment. It's actually embarassing as they find it easier to believe her rather than me.

 

With that kind of support, I've seriously considered ending it all, but I will fight until the end and make the most of what I can do (albeit painfully).

 

The symptoms do wax and wane, so there are days when I can do a lot and others where all I can do is curl up on the sofa with a hefty dose of painkillers. Cold days are the worst.

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Dimarzio

 

Have you tried asking her to read some of these posts?

 

Have you suggested to her that she do the unforgiveable and simply Google Scleroderma?

 

Surely reading some of that stuff would give her some idea of how it can be.

 

Judyt

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Hi Dimarzio,

 

How very sad that your wife is not able to be more supportive to you; possibly it's because she genuinely doesn't realise how serious scleroderma can be. I think that because it is such a rare and diverse disease, the average person really does not understand how crippling and debilitating it can be.

 

As Judy has suggested, perhaps your wife should read some of the forum posts, or even the Patient and Caregiver Stories which we have on our website. It might give her a little more insight into just how badly the disease can affect scleroderma sufferers.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Dimarzio,

 

Clearly, your doctor is not going to be a great source of enlightenment on the topic of scleroderma, and your wife is not in the running for the ISN Supportive Scleroderma Spouse of the Year award -- at least, not for 2017.

 

Spouses tend to be a bit hard to get rid of, and generally they earn their keep through all sorts of other thoughtful little (and big) things they do, so I'm sure you count your blessings for the other ways in which she shines.

 

Should it help you at all, I've also had doctors, close loved ones, and friends who didn't understand, or choose not to understand, anything about scleroderma. It's easier for them to think of it as a form of hypochondria, than to learn the (often scary) facts about it.

 

So I developed a policy. If it's a doctor who is a scleroderma dunce, I'll change them IF the issue involves a critical aspect of scleroderma (or the illness in question). 

 

If it's a loved one, I'll love them anyway and not make my loving response dependent on their understanding of me or my illness. As part of that, I quit trying to convince them that I'm sick in any way.

 

I've even kept friends who didn't "get it" at all, provided we have other interests in common. 

 

I do wish that when I first got sick sick (not cold or flu sick), that someone would have warned me that I'd be running into all sorts of disbelievers -- especially when it comes to weird and rare diseases like scleroderma -- and that they will remain that way, no matter what I say or do.

 

On top of that, I wish they told me that it was okay. That I was not alone. And that I could still love such people with all my heart, even if they never "got it".  It's not my job to help them get it, either.  It's my job to take the best care of my health, and my sanity, that I can.

 

Sometimes, that entails just ignoring the naysayers. Often it entails just forgiving the naysayers. Always, it entails holding our head high. We've done nothing wrong, except acquired a sickness that hardly anyone can spell, few can pronounce, and hardly anyone can explain!

 

:hug-group:


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.

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I'm sorry,

 

Wow, the doctor sounds like he is less than knowledgeable about Scleroderma. I would try to get referred to a scleroderma specialist.

 

When I went to a doctor in the beginning when my tests first became positive, I asked a doctor then if I could be referred to a specialist.

He said, "There's no point, if you do have it there's nothing you can do anyway." Terrible.

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Asked my wife to read this thread and she went off into a tirade of "there is nothing wrong with you. Just because a blood test says that you have Scleroderma and the Rheumatologist says that you have Scleroderma doesn't mean that you've got it. It's all in your imagination".

 

I'm also, apparently abusing her by writing this. I have no idea how stressful this is for her having to deal with my imaginary issues.

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Thanks for all your understanding responses, by the way.

 

Sweet, I would appreciate a bit more from you as you always have something interesting to say.

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