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Miss Diagnosis


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#1 louiserawlings01

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Posted 02 May 2013 - 11:56 PM

Good morning everyone.  My daughter was diagnosed with Systemic Sclerosis 2 years ago at the age of 18, confirmed with a biopsy.   We were distraught and felt like we had been handed a ticking bomb.  Yesterday she visited Prof Denton at the London Free and was told that she had Localised Scleroderma with fascitis although unusual in that it only affects most of her left side, without having Raynaud's, she has not got systemic. 

 

I cried most of yesterday for her and had the best night sleep last night in 2 years.  I am so over the moon for her, the whole family across the globe are ecstatic.  

 

Has anyone else been mis-diagnosed with this very complex illness?  My daughter is very happy she does not have this ticking bomb over her head but at the same time she is also annoyed that she has had to look at her life very differently for the past two years. I am just so happy that my little girl does not have Systemic.



#2 Shelley Ensz

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Posted 03 May 2013 - 11:54 AM

Hi Louise,

 

In my earlier years in this line of work, I heard of a lot of cases of people with morphea being told they had systemic, that they had just a few years left to live, and that they should put their affairs in order.  Since the more widespread use of the internet, I think this has become less common -- even the doctors are more educated about rare diseases thanks to Dr. Google -- but it still occurs.

 

The worst one I personally encountered was a patient in the Ukraine who as a teenager was told she had systemic and only a few years left to live. So she put everything on hold, her schooling and all her plans for the future. But when she described her illness to me, I thought it far more likely that she had morphea, and I encouraged her to see a scleroderma expert.  She had to travel to Israel to see a Russian-speaking scleroderma expert, who confirmed that she did, indeed, have morphea -- and thus a brand new future with unlimited possibilities.

 

Really, it's astounding to labor under the illusion that you don't have long to live, but then discover a normal life ahead of you, as far as you can see!  Do your best to help your daughter not get mentally snagged in looking through the rear view mirror now, because It's going to require all her emotional resources to refocus on looking ahead, with optimism and joy.

 

I have also been given a few warnings that I only had a few more years left to live. The first warning occurred in my early 20's, the second in my mid-40's. Now I'm in my mid-60's.  Now I actually feel blessed by those experiences. They served to help realign my priorities in life, help me get in touch with the most important things, and still serve to make me thankful for every day. Your daughter has encountered a near-death experience, so to speak, the same as you every time a driver cuts you off or comes too close to your bumper on the freeway. Sure, you can say, this is different, and it is, but is it really? 

 

The one binding thing we share as humans is the fore knowledge that our life as we know it on earth is limited. And only death row inmates know the exact date of their departure.  I am very glad that your daughter has an exciting, fresh new beginning.

 

Please help her see that her time spent laboring under a death sentence was not wasted. Show her how it has served to make her better in ways that will bless and guide her, for all her remaining days.  She already knows the hurt and disappointment this has caused. Such hurt cannot be erased; I cannot make light of that, as I know the angst she has had to cope with. But if she can cope with that, she can cope with anything. The real trick now is learning how to "see" the future, and to begin believing in it, again.

 

:emoticons-group-hug:


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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 louiserawlings01

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Posted 03 May 2013 - 12:08 PM

Hi Shelley

 

Thank you for those words, not looking in the rear view mirror is an excellent way to look at this experience. 

 

I have two daughters, Cheryl is my youngest with scleroderma and has always been naive and a little childish, this experience has made her grow up very quickly and made her a little more outspoken than she used to be.   I will point this out to her that this has brought out in her something that was hidden away.  

 

This has also had an impact on my older daughter in that she has all this what I would call  'survivor guilt',  think this impacted her a lot, so just hope we can put this behind us. 

 

Prof Denton was able to suspect she had morphea from just listening to her story,  she had not even been examined yet. 



#4 judyt

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Posted 03 May 2013 - 12:44 PM

Hello Louise,

 

What great news!   Well, maybe there is still the Morphea to deal with but not having to go through the ravages of systemic is obviously great.

 

Like Shelley I am now getting on in years and have lived through the ups and downs since I was 22.   In my case, because I have no skin involvement except for Raynaud's, and the fact that we live in NZ, nobody recognised what was going on until 10 years ago.   Not knowing, as we have discussed elsewhere, is just as bad as a mis-diagnosis because you become convinced (or others do) that you are a Hypochondriac.   Not looking sick is another problem (not that I would want to look sick really) because it makes all the problems seem faked.  

 

Best wishes to you and your daughters.

Hope you can celebrate and make the most of the relief.

Judyt



#5 louiserawlings01

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Posted 03 May 2013 - 01:19 PM

Thank you Judy just so happy that its not systemic.  However the sceptical me is still questioning a few things.  I watched Amanda Thorpe's video of systemic showing how her symptoms started and that is how Cheryl's started with the swollen fingers hands and feet then her whole body became swollen. Then the skin thickening all down her left side then the claw like hand being created, all this happening within a few months leading up to her diagnosis.  Since then she has exercised her hand and done a lot of needle point which has helped to straighten her hand out so that she can now move her fingers and grip better, although her foot is still very bad with no padding on the sole of her foot.  So of course I'm thinking those symptoms are systemic sclerosis or am I just being over cautious like a mum?



#6 Amanda Thorpe

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Posted 03 May 2013 - 03:33 PM

Hello Louise

 

If Prof Denton has given a diagnosis of localised you can have reliance on the diagnosis, in my opinion. He is, after all, the expert here in the UK.

 

Look at it this way, Cheryl is now under the Royal Free so should anything change you can get treatment, by experts, sooner rather than later. Scleroderma is a wily animal with many guises and is not always straight forward but if Prof Denton thinks it's localised I'd accept that for the moment and just get on living, you as well as Cheryl.

 

Enjoy this turn of events!

 

Take care.


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#7 judyt

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Posted 03 May 2013 - 04:33 PM

Hello again Louise,

 

I think that maybe Cheryl is proving the point that almost everybody with any type of Scleroderma will be different from the next person who shows up with symptoms.

However,  I would be inclined to take Amanda's advice and trust Prof. Denton.   Oh! for a man like him here in NZ.

 

Try not to worry, take each day as it comes and make the most of what she CAN do.

 

Best wishes

Judyt



#8 Joelf

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Posted 04 May 2013 - 05:34 AM

Hi Louise,

 

What absolutely wonderful news for your daughter and your whole family! :emoticons-yes:

 

As the others have advised, you now have the diagnosis of a true Scleroderma expert in Prof. Denton (I've seen him myself, so can also testify that he knows his stuff!!) Amanda's words are very true, but hopefully now Cheryl is under the umbrella of The Royal Free, if there are further complications, you'll know that she'll be treated in the best possible way.

 

Enjoy your reprieve from anxiety!!

 

Kind regards,


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#9 louiserawlings01

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Posted 06 May 2013 - 04:22 AM

Thank you everyone. I am sleeping much better now than I have in the last two years. I just need to breathe and not question the first diagnosis.  As she will only be checked once a year, I so hope that anything that this awful disease wants to throw is obvious so we can get it treated asap.  She is still under her own consultant twice yearly.  And to think her own consultant in Edinburgh tried to dissuade her from going, saying she would not learn anything different. 



#10 Shelley Ensz

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Posted 06 May 2013 - 11:24 AM

Hi Louise,

 

Oh my, what an awakening her consultant in Edinburgh is going to have.

 

I wish I could be a little mouse in the corner!

 

On top of the stress on your daughter, I am sure this has been horrible for you and your whole family. This is a lot to make peace with so that you can all look forward. Remember that it may be very hard for your daughter to refocus on the future. Don't let her stay mired in the past.  If it seems like she may need help making the transition, don't hesitate to get some counseling. 

 

It is a lot easier to lapse into talking about things that have transpired, instead of things that we aspire to. Overcoming this emotionally is probably even more important than any physical effects of her illness.  I'll be sending lots of extra warm wishes your way!

 

:emoticons-group-hug:


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.

#11 Amanda Thorpe

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Posted 14 May 2013 - 03:51 PM

Hello Louise

 

I'm with Shelley, ditch the past, bin it off! I hope you are all able to move forward and have a wonderful time in your new place the future, well they call the past another country don't they?

 

Take care.


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