Tammy

New & Needing Help From People Who Know!

14 posts in this topic

Several years ago my doctor suspected that I had scleroderma, she sent me to a rhumitologist (sorry about the spelling!). He said that I had several symptoms but that at my age (about 26 or 27) he wasn't comfortable diagnosing it, especially since it "ins't that common". I am 33 now and have had to change doctors, my new doctor thinks the same as the previous! Over the past year I have had a lot of health problems so when the new doctor said something about the scleroderma I told her that if there wasn't anything that could be done about it I would rather not know that I have it!!, is this a wise coice? ANY advice would be GREAT!!!

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Hi Tammy,

Welcome to the Sclero Forums. I am so glad you have found us, but sorry it's due to your possible diagnosis of Sclero.

Oh trust me there is a lot they could do for you. There are some meds such as Plaquenil that can halt the progression in some people and at lease slow the progression.

Please allow your doctor to run tests and then go from there.

One day at a time my friend.

Here is a link about scleroderma. And another one about treatments. Review these and then throw some questions out to us and let's see if we can help you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Tammy,

 

It depends on many different situations whether you want to know (as in have it documented in your medical record) right now. First off, if your doctors haven't confided their suspicions to your medical record yet, you may want to see if you can acquire some good life insurance (if you need it.) If you are contemplating any changes in your health insurance, do it now as it may be difficult, expensive or impossible after an official diagnosis.

 

It may also affect your work life, depending on how your employer's health insurance program works. If you don't have disability insurance yet, see if you are still eligible for it or not.

 

Once you have those issues settled, then, if you want, you can go ahead and "take" the diagnosis. It's good to have it documented for when you seek medical care from any other providers (lest they think you are pulling their leg), and provides a certain weird type of peace of mind. Pre-diagnosis-limbo isn't really all it's cracked up to be, for most people, even though that situation can sometimes linger for years.


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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Hi Tammy,

I agree with Shelley and Sweet and onec you have figured out what to do get treatment. If you have the don't want to know so I don't have to deal with it attitude that can have lasting effects that may not be treatable. If things are progressing and changing but are caught early the treatment will be more effective.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Apparently I have had sclero for years and was diagnosed in May 07. I wish I had known so I could have been prepared I.e. life, health and disablity insurance. Ignorance is not bliss. Good luck. Lynda

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Tammy,

If you decide to "not know", please make sure that you continue seeing the dr regularly for progression of the disease, like ct scans, lung functioning tests and labs. I'd hate to see you get worse and not be treating it.

I hope you do not have it but if you do, it's something you will learn to cope with.

Jennifer

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Hi Tammy and Everyone,

 

Good information for you, supplied by those here, especially about life insurance and what Shelley provided for you.

 

However, as Lynda said... ignorance is not bliss. Prior to my diagnoses, my blood pressure always maintained at 115/65... among many of my "new" symptoms was very high blood pressure: 200/130 +. As a result, I was put on blood pressure medication immediately because HBP CAN cause damage to the kidneys, my dr told me. With my Raynauds Phenomenon, I was put on medication to help with that, as well.

 

Tammy, I've noticed that many doctors don't want to "put such diagnoses in our records" for the reasons Shelley already named. So, contrary to our feelings, they do oftentimes watch out for us. If we are displaying symptoms that need medication though, there should be treatment... to prevent the onset of further symptoms/problems.

(BTW, I'm not a dr, but over they years (since 1995 - when I was formally diagnosed), I've done a great deal of research because I had never even Heard of the diseases I have, let alone knew they existed). Plus, once I joined this community, I've learned so much from other's experiences.

As is said often here: Knowledge is Power But... it's all in what you yourself desire.

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Tammy,

Its just my oppinion, but I would want to know. There are things one can do to counteract different symptoms that you might be experiencing from Scleroderma. You can also find out what subset of Scleroderma you might have...some cases are better/worse than others. A good prognossis can make a world of difference on how you see your future.

 

'what ever you decide, we are here for you. Welcome.


*WestCoast*

 

********

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A heart felt "Thank You" to all who have replied to this post!! I don't know any of you but I already think that you are great!

 

Well, my next questions are, where do you start, what kind of doctors do you use, what tests will they run (if any)?!? How do you know what stage you are in? The Raynaud's started when I was 14 or 15 and only affected 1 finger, now it affects all of the digits on both hands (I get a lot of finger tip lacerations too) and both feet. I have arthritis in both hands, both hips and the neck, uterine fibroid tumors, I had a pituitary tumor removed when I was 17, high blood pressure, low blood sugar, I had to have my gall bladder taken out earlier this year, and a host of other conditions, how do you know what is related to this and what isn't?!? I feel overwhelmed and a bit like a hyopochondriac (sorry about the spelling).

 

Most of the time I want to just sit and cry! I haven't told anyone in my family about this other than my husband, up until I found this site everything that I had read about it was doom and gloom. After reading some of the other posts and replies to this one, I am finally seeing some light at the end of the tunnel! Again, thank you, to all who have replied

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Hi Tammy,

 

I would highly suggest scheduling an appointment with a rheumatologist. They will know where to start and with what tests. I'm glad you are feeling a bit better, or at least seeing a light at the end of the tunnel!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Tammy,

 

For years I went into denial with the laundry list of symptoms that were turning up, saying things such as, "Oh, it's nothing, I just overdid it yesterday," or "It's just that time of the month," after waking up on several occasions where I couldn't even move my legs to get out of bed due to excruciating back pain. This was way back at the age of 19, and I didn't want to believe that anything was seriously wrong. Finally I had to find out, and all my ignorance and denial was far from bliss--so much could have been dealt with much earlier on. This was a habit learned from my parents who denied everything and blamed it on "growing pains," and it was a stupid habit for me to keep! Not that I'm calling you stupid, please don't think that, and the fact that you've already been seeking medical attention is good to know. However, if you end up in the ER without a formal diagnosis, you probably won't be taken very seriously and could be sent home without any treatment at all, which could potentially (and all too quickly) be deadly if your kidneys or heart are involved at that point. I say this from experience.

 

Aside from all the excellent advice you've received, please do go for a formal diagnosis, and realize that there are many more options and treatments available now. Maybe a cure will come along at some point, but there's no sense not fighting like mad in the meantime if you can improve your life until that day. I'm so sorry that you're also in this battle, but we're here with you, and it's so encouraging for us to read all the research articles as well as the questions posted here, and hopefully you'll also be encouraged!

 

Best wishes to you,

Elehos

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Hi, Tammy. Let me add my welcome to the ISN Sclero Forums. There is not much I can add to the excellent advice already given, though I agree that you should see another rheumatologist - a lot has changed over the past few years. Whether or not you 'take a diagnosis' it is important that you become familiar with the disease so you can get the proper treatment for its symptoms. You may find our Difficult Diagnosis page has some relevant information to help you sort this out. In any case, I am glad you found us and look forward to hearing more from you.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Tammy,

As Sweet suggested, a rheumatologist can be an asset when dealing with what you are. Also, that specialist will likely take an overview of your symptoms and then possibly refer you to the appropriate specialists.

With the fingertip lacerations you are experiencing, it would be good to get that addressed soon. Prior to your appointment, many of us find it helpful to write down symptoms, problems, etc. that would help with your dr's assessment of your health.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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