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Biomarker for Diffuse Scleroderma skin has been discovered!


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Test Results of May 11th and May 16th


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#1 debonair susie

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Posted 27 May 2011 - 03:06 PM

Normally, I don't start threads...I only like to POST on others' threads.
However, I had promised my Sclero Sisters a "run-down" as soon as I found out, so here goes!

I hadn't heard from the nurse, so with the holiday coming up, I thought I had better call; she returned my call with the following information, but I asked that she send me the hardcopy reports of each, which she said she would also do.

The GOOD News, (even though I felt confident it would be) is the thyroid biopsy showed benign results, so I can do the :happy-dance: !

The only blood result she gave me over the phone is for the one I asked be tested (that checking for menopause): To say that I am "disappointed" would be an ABSOLUTE UNDERSTATEMENT!!! :emoticon-crying-kleenex: I'm SORRY, but why should a female have to go through this for 150,000 years as I have??!!! (Well...maybe I exaggerated a BIT) ;)

Even though I am so grateful for the biopsy results, I am equally UNgrateful for this very disheartening "meno" news.
At any rate, once I get my hands on the hardcopy and see the numbers, I'll have a better idea how many 1000s of years I have left of this fun and frolicing "Time-of-my-Life"! LOVE those Hot Flashes :blush:

Now that my "Rant" is over, I want to wish each of you the very best possible weekend...Pain-free and comfortable!
Special Hugs,

Susie Kraft
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#2 Lynnie

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Posted 27 May 2011 - 03:41 PM

Hi Susie

Well a big :emoticons-line-dance: on the benign results of the thyroid issue!

And am at 250,000 years into the menopause frolicing dance ..I think we all should be given a months worth of medication and bobs your uncle.....gone! After all, a month of extra drugs would not matter to our long lists :emoticon-dont-know: haha.

You hang in there in our "cold" world; the heated flush can be a very welcome visitor but usually come at the wrong time hahaha.

Take care you never know you'll wake up one day and it'll all be over!

Here's a "warm" hug to keep you going till it does but you aren't alone going through the bother am sure the others will pop in saying as much! :emoticons-i-care:
Lynn

#3 Sweet

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Posted 27 May 2011 - 04:08 PM

Hi Susie, good news indeed!!! :emoticons-line-dance:

How about some ice-cubes rubbed all over your face for the other problem. :)
Warm and gentle hugs,

Pamela
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#4 miocean

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Posted 27 May 2011 - 05:33 PM

Susie,
I am glad that the thyroid issue is good news! :emoticons-line-dance:

I was one of the lucky ones. I sort of missed menopause. A couple of hot flashes and spotty periods and it came and went. My gynecologist put me on a hormone for a couple of months and right around the same time I started with the scleroderma symptoms. I don't think they were related.

I have a friend who is suffering from it terribly right now and has tried everything from diet to acupuncture and nothing has worked. It sounds like it is miserable. :temper-tantrum:


I'll be thinking about you,
miocean
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#5 Sheryl

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Posted 27 May 2011 - 05:43 PM

Pretty good news Susie. Thanks for the update. I am glad you called the nurse so you can take a bit of worry from your thoughts. Have a great weekend.
Strength and Warmth,
Sheryl

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#6 Joelf

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Posted 27 May 2011 - 11:52 PM

Oh, Susie, that is good news about your thyroid biopsy! :emoticons-yes: :emoticons-line-dance:

What a pain about the menopause, though!! :emoticon-crying-kleenex: I am sorry and also a bit surprised :emoticon-dont-know: (us being twins! ;) ) It's a pity you couldn't have had the same lack of symptoms for it as I did!

I'm thinking of you and here is an extra large :emoticon-hug: from across the pond to you!

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#7 Amanda Thorpe

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Posted 28 May 2011 - 02:18 PM

Hello Susie

Fantastic for the thyroid results :emoticons-clap: , sorry for the menopause results though :emoticon-bang-head: !

Take care lovely lady.
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#8 debonair susie

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Posted 29 May 2011 - 02:20 PM

All of you Ladies are AWESOME... :thank-you: for your replies!

It's really comforting to know I'm in such great company...going through this "WITH" you, Lynnie! :happy-dance:

Thank you, Sweet....(Please send ice cubes, Everybody)! :P

I'm so glad you sailed through so quickly, miocean! (Because I take Neurontin for Trigeminal Neuralgia, which is actually prescribed for 3X/day but have only been taking it at night, I've decided to take it the 3X/day because it may help quell the hot flashes...fingers crossed ;) )

Thanks Sheryl...me too, yet I'm STILL waiting for the hardcopies...she didn't mail them :emoticon-bang-head:

I'm surprised too, Joelf, ESPECIALLY with our being "Across-the-Pond Twins"...Oh well, if it had to be one of us, I'm glad it's me, rather than you :high-five: ; Thank you!

Thank you for your special words, Amanda :happy1-by-lisa-volz:
Special Hugs,

Susie Kraft
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#9 Shelley Ensz

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Posted 31 May 2011 - 05:20 PM

Hi Susie,

I'm doing the Sclero Happy Dance for your thyroid biopsy coming out okay!

:emoticons-line-dance:

About the neurontin, you might want to check with your doctor about it. Oddly enough, although it can reduce hot flashes, it can also cause them as a side effect. So if you increase dosage, really keep close track as to whether its making things better -- or worse. I've heard of some people having hot flashes into their 70's -- let's really hope you're not one of them. On average, I think menopause lasts from a few years up to a decade or even much longer. It's just like scleroderma, everyone is different.

At first I didn't even recognize it when I started having hot flashes, because I've had night sweats occasionally, for decades. So like an idiot, I complained to my doctor that I was "now getting night sweats during the day, too." :o

See, like I always say, I have no medical training at all....:lol:
Warm Hugs,

Shelley Ensz
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#10 Annie20

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Posted 31 May 2011 - 07:58 PM

Hi Susie,

So pleased to read your thyroid biopsy was benign. :woohoo:

I am sorry about the menapause giving you grief. You are not alone my friend. What has helped me out and I am still currently on it is an over the counter to reduce hot flashes taken 1 tablet in morning and one at night. You can PM me for the brand name. Prior to taking it, I checked with the pharmacist to make sure it did not interact with any prescription meds I currently am on. I also had checked with my doctors to get the "green" light. I realize I cannot offer you medical advice and that you should always check with your physicians to get their input when there is any kind of drug added to your regimen.

My thoughts are with you. :emoticons-i-care: Best wishes!

Take care & hugs


Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#11 debonair susie

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Posted 02 June 2011 - 10:52 AM

Thanks Shelley!

Me TOO! I hope I'm not one of those who experiences these symptoms well into my 70s...YIKES!!! :blink:

As for the Neurontin, I have the go-ahead for the Neurontin from my doctor. However, I'm only taking 2/day, rather than 3/day, which seems to be helping, at this point. Our temperatures have "sky-rocketed" into the 70s...after a 228-day run of Temperatures LESS than 74 degrees, which is REALLY unusual for "these parts"! I may actually MELT! :lol:
Special Hugs,

Susie Kraft
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#12 debonair susie

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Posted 02 June 2011 - 11:04 AM

Thank you, Annie!

Yes, awhile back, you had told me about what you were taking; I'm really happy it seems to be helping you, too! ;)

Unfortunately, I'm unable to take it, as it won't "mix" with my meds, because I was really looking forward to being "heat-free"! :P

Oh well, MILLIONS of women have made it through this, so I'm sure I will too!
Special Hugs,

Susie Kraft
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