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My Guarded Good News


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#1 March

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Posted 22 October 2009 - 12:26 PM

:happy1-by-lisa-volz:
Greetings friends,

I have returned from Johns Hopkins today and am pleased to report that, as expected, the care from Dr. Boin was excellent. Most all of my fears are unwarranted with regard to Scleroderma. He confirmed the diagnosis of limited scleroderma and there is no organ involvment as evidenced by PFT, chest x-ray and echo-cardiogram. The doctor conducted a head to toe exam.

The esophagitis, diarrhea, reflux do not appear to be connected with the Scleroderma. The doctor felt the fatigue (my worst problem) and brain fog are not from this disease. This is good news and bad news!

While at Johns Hopkins, I saw my Endocrinologist and we discussed the fact that my blood sugars are not being controlled. It would appear that whatever mechanism that was in place prior to my stomach surgery is not working to control the flood of insulin (over reaction of my pancreas) when my body tries to process sugars. He and my local Endocrinologist feel that the fatigue is a combination of the chronic diseases I have along with the blood sugar highs and lows. An option, but one I really don't want, is to have the rest of my pancreas removed and become a diabetic. Meanwhile, the doctors struggle with how to manage my blood glucose.

Many thanks :thank-you: to all of you for your good wishes and advice. I read extensively from this website and others to become educated. While limited scleroderma is not a bed or roses, for now at least, it appears to be stable.

This is my hope for all:

May we be granted the serenity to accept the things we cannot change,
Courage to change the things we can,
And wisdom to know the difference.


Mary Alice
"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine

#2 Jeannie McClelland

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Posted 22 October 2009 - 03:30 PM

Mary Alice, it was good to hear you've had a productive and at least partially reassuring trip to Johns Hopkins. I hope your scleroderma never progresses and they can get your glucose under control. It's my understanding that research into endocrine disorders and particularly diabetes is producing good results and is well funded. Will you keep posting and let us know how things are going on that front?

Best wishes,
Jeannie McClelland
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#3 enjoytheride

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Posted 22 October 2009 - 04:00 PM

:emoticons-yes: It's so nice to be able to a reliable opinion.

#4 sandra

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Posted 23 October 2009 - 01:37 AM


Hello Mary Alice! :flowers:

I am doing the happy dance for you and your news, the best part is you're diagnosed and confirmed "Limited Scleroderma". Hey, its better knowing, than not. Posted Image

I too have visited Johns Hopkins just a few months back and was also confirmed with Scleroderma and overlapping things. I could have taken the news two ways, I chose the positive route, and I am learning to live with my new partner "Sclero". Like any new relationship, there are some pitfalls, but I quickly learned to accept it , live with it and make the best of it. I have learnt to avoid all stress at all cost. "Sclero" is not a happy camper when it comes to stress! :angry:

The most positive thing I learned at J.H. was people can live a full long life. The doctor had a patient 92 years old.

I also made a lot of adjustments in my lifestyle and daily routine, to accept and work with Sclero as comfortably as I could make it. I also quickly learned that it was so much easier to deal with each day as it came, rather than storing all the complication and symptoms in my head. It became so mind boggling and rented to much space in my brain- So not worth it!


I better close for now, almost writing a novel!

We are all in this together my Friend! This group is a GREAT support line.

Positive Sandra :bye:

#5 Jeannie McClelland

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Posted 23 October 2009 - 04:39 AM

What a great post, Sandra!

You've given us some real words of wisdom. I liked your analogy of 'renting space' in your brain. A good friend once told me that worrying is like paying insurance on a house you don't own. Time to evict all those negative thoughts.

Warmest hugs,
Jeannie McClelland
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#6 Sweet

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Posted 23 October 2009 - 11:25 AM

Hi, Sounds like a good visit for the most part. It's also so nice to feel like you are being well taken care of by people that know what they are doing!
Warm and gentle hugs,

Pamela
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#7 Joelf

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Posted 24 October 2009 - 05:25 AM

Hi Mary Alice

It does sound as if for the most part you've had a very positive visit to your doctor; it's certainly a comfort to consult someone who is an expert in the field of Scleroderma.

I also have Systemic Limited Scleroderma (unfortunately it's had a pop at my lungs! :( ) but like you I have an excellent team behind me whom I trust completely.

Here's hoping your symptoms remain stable.

Kind regards x

Jo Frowde
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#8 debonair susie

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Posted 24 October 2009 - 09:09 AM

Hi Mary Alice,

I'm glad your appoinment at John Hopkins helped you feel confident in your dr(s), as well as hopeful for the best treatment.

I'm sure the best route for treatment won't be gone into hastily, which could well be a good thing.

In the meantime, I'm sending over {{{Gentle Hugs}}} to tide you over until that time.
Special Hugs,

Susie Kraft
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#9 March

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Posted 24 October 2009 - 03:03 PM

:emoticons-yes: You all are THE BEST!! Thanks so much for the great advice and encouragement. It was good to have what my local doctor diagnosed validated by scleroderma experts.

Does anyone know what a leaky heart valve is? Is this one of those things that most everyone has? That was the only thing of significance that was found on the echocardiogram. I wonder if I am getting too paranoid.... :blink:

I am feeling somewhat guilty, almost disappointed that my condition is not worse...how dumb is that? Maybe I am a touch depressed. I will see my primary care physician Tuesday and hopefully, she can put all the pieces together for me. Having seen so many specialists for so many different problems is really getting old.

Please forgive me for my pity party.


Mary Alice
"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine

#10 Jeannie McClelland

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Posted 24 October 2009 - 03:19 PM

Hi Mary Alice,

I'm pretty sure a leaky heart valve is what used to be called a 'murmur' - mostly because that's what it sounds like. It's my understanding that heart valves have little flaps, called leaflets, and if they don't close completely, they allow regurgitation or a backwards flow of blood. I believe they aren't all that uncommon and can be caused by any number of things and treatment is decided by how serious the leakage is.

Having said all that, you could certainly ask that a cardiologist review the echocardiogram. I'd question it, if it were me. If it's nothing important, you'd at least have that reassurance plus having it highlighted in your baselines.

Pity party? Oh Sweetie, we deserve the odd pity party!

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network