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Getting a Correct Diagnosis

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#1 lou56


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Posted 28 March 2011 - 06:28 PM


I am a new member to this forum. I have systemic scleroderma-I was diagnosed in 2004,after two years of mystery illness-migraines so bad I would pass out and be confined to bed. I saw a rheumatoligist that told me that there was nothing wrong with me, and to go home.

I ended up in hospital,and as I had had blood tests, the doctors knew I had something going on, having a highly positive ANA. I was given an injection of steriods, and more steriods to be taken orally, they were a massive dose, and had to take 10 tablets first day, then 9 the next day, until I was weaned off them. Strange things were happening to me, and I told my husband that something was wrong in my head. By the time I had taken the full dose of steriods I was talking to the walls not sleeping, and pacing the house like a caged lion. I ended up in a mental hospital, and was given even more drugs.

I was admitted to this hospital close to my family, and was apart from my husband for more than 6 months. This was a very hard time for me, and was too scared to go back to the doctors to find out what was wrong with me, so I let nearly a year go by before I asked my general practitioner to send me to another rheumatologist.

I now have a very caring general practitioner and rheumatoligist, and feel that I am now getting the best treatment possible. My rheumatoligist said that the massive dose of steriods probably sent me over the edge, and they wouldn't be giving me a dose like that ever again. He was not the rheumatoligist that prescribed the massive dose of steriods.

Has any one else had a similar situation like mine?

#2 Robyn Sims

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Posted 28 March 2011 - 07:59 PM

Hi Lou,

What a terrible time you had getting the correct diagnosis, and then being over-prescribed with steroids. My heart goes out to you.

So pleased that you now feel confident with your new specialist. The story of taking years to get a diagnosis is not unusual in itself, however the over prescription of steroids certainly is to me. Will be interested to hear if this has happened to others.

Your story is the reason that Scleroderma Australia have decided to join with Europe for the World Scleroderma Day on June 29. For many years we have had an Awareness Month. The aim of this attempt to gain media attention, which has been moderately successful, is to alert the general community about the symptoms of scleroderma and hope early diagnosis will follow.

Thank you for sharing your story and welcome to the ISN forum. You will find excellent advice and support here.


#3 Joelf


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Posted 29 March 2011 - 01:32 AM

Hi Lou,

A warm welcome to these friendly and informative forums!

Goodness me, you have had the most dreadful time trying to get a proper diagnosis; I'm so sorry. Thankfully you now seem to have a competent rheumatologist who is giving you the help that you should have had in the beginning. Scleroderma is notoriously difficult to diagnose (we have an interesting link here which I hope you'll find helpful.) As Robyn has said, a number of our other members have had trouble getting a diagnosis; I believe the average time is 6 years.

Although steroids have their place they should always be prescribed with caution for Scleroderma patients as they can precipitate a renal crisis (another interesting link here.) I take a low dose myself and they greatly reduced the swelling and discomfort I experienced; however, I can empathise with you as regards to the effect they create. They did have me bouncing off the walls at first (however, a lot of people think I'm a bit peculiar anyway so didn't really notice much difference!! ;) :lol: )

I'm so pleased that you're now feeling a little better and that you've found our forums and joined our community. Do please keep posting and let us know how you're faring, won't you?
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#4 red


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Posted 29 March 2011 - 06:13 AM

Hi Lou, welcome to our family! I am so sorry you've gone thru so much difficulty and time being correctly diagnosed and treated. You will get much empathy from the sclero club here, as I think a lot of us, (maybe most of us? :glare: ) went years without a proper diagnosis, going from doctor to doctor until we finally found one or two who took the time and pieced our symptoms together and came up with systemic scleroderma.

Personally, I had 10 years of symptoms before I was diagnosed with limited sclero - starting with reflux, gallbladder dysmotility, diffuse joint pain and fatigue, hair loss...I remember going to the doctor once telling him the reflux over the past night was so bad I felt the acid dump into my ear as well as my lungs, I barely had a voice as my throat was so burned - the doctor looked at me like I was crazy and said he didn't think it was possible for the reflux to go into my ear, and again told me two weeks later, when I had a perforated eardrum from infection, as well as pneumonia, that it was just a coincidence and the infections weren't from the reflux. It wasn't until I started vomiting blood that they finally took me seriously (or maybe they were tired of hearing me complain! :o ) and sent me off to a GI specialist, which started my diagnosis journey.

I am no stranger to steroids, having had lifelong asthma which has been worsened by the reflux, and I've had allergic reactions to a couple of antibiotics too, so I have been on prednisone many times. The highest dose I've been on was 60 mg a day for 3 days, then tapered down - prescribed after an anaphylaxis attack. I sympathize with you completely - the high steroid dose was horrible - I barely slept for those 3 days, my heart was pounding out of my chest, and I felt like climbing the walls, could only pace the floors and wish that the crazy thoughts would go away. I feel so badly for you that you went through what you did!! :crying:

After my scleroderma diagnosis, I was cautioned that if I had to take prednisone, the dose should be as low as possible, as high dose steroids can precipitate renal crisis, like Joelf stated. When I have asthma flares now, I'm only given 30 mg tops until breathing is better, and quickly tapered down.

Unfortunately just this weekend I've been diagnosed with sarcoidosis, I've not yet gotten to the rheumatologist to discuss treatments, but I know steroids are first-line therapy, don't know what dose or if maybe there are different meds to treat it.

Keep posting and let us get to know you better! I'm glad to hear you're under the care of competent and caring doctors!


#5 Amanda Thorpe

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Posted 29 March 2011 - 03:53 PM

Hello Lou

Welcome to the forums and congrats on landing a diagnosis! For some people it can take years before they are finally diagnosed with scleroderma and during that time they are made to feel many things, as you know. Well now you're here we hope you'll stay awhile.

Take care and keep posting.
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#6 Jeannie McClelland

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Posted 29 March 2011 - 04:41 PM

Hi Lou,

I'm just popping in to welcome you and send you one of our famous ISN hugs. :emoticon-hug:

You've had a terrible time, but it sounds like you've got good doctors now. Some of them, well, they aren't all we could hope they would be. Keep posting and let us get to know you better.

Best wishes,
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#7 lou56


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Posted 02 April 2011 - 09:22 PM

HI all
Thanks for the welcome to the forums. I appreciate that I am not alone.

#8 Shelley Ensz

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Posted 24 April 2011 - 05:44 PM

Hi Lou,

I'm dropping by to say hello and to welcome you to Sclero Forums, too. I am very glad you found and joined us. In fact, I'm so glad, I'm going to throw a Sclero Happy Dance, just for you!

Warm Hugs,

Shelley Ensz
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#9 debonair susie

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Posted 07 May 2011 - 05:01 PM

Hi Lou,

I too, wanted to stop by and say Hi and welcome you!

I am so relieved you emerged victorious after such a harrowing experience, not only with adverse effects from the megadoses of steroids, the time in the mental hospital ...YIKES :o, but being away from your husband for so long :nervous:. I'm absolutely postive I never would have turned around and gone to another dr after all of that EITHER!

What great news that you are very comfortable with both your internist and rheumatologist!

I've never taken steroids, even though I have no doubt there are probably times I should have. However, a rheumatologist I saw only a couple of times, felt I should have gone on them.

Please take good care!
Special Hugs,

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