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Old 06-04-2009, 12:26 PM   #1
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Conniel7777 HB User
UPDATE to "New and Very Scared": What the Dr Said

Hi All,

I just got back from the Rheumatologist.. I do NOT have Lupus.. I have "Limited Scleroderma".

I was not ready for that diagnosis.

I certainly didnt want Lupus, but I wouldnt want Scleroderma, either.

At this time, there is nothing except my bloodwork that indicates the Scleroderma. I have ZERO other symptoms.

No thickening of the skin. No Lung problems. No problems swallowing. No gastric problems. No constipation, diarrhea, or bloating.

Nothing but "Centromere Type" ( marker? test? I forget. what know for sure is that I asked her 3 times "NO lupus? NO lyme?" and she said "No, I ran the test / marker / titer (?) for Scleroderma and its positive.

She said something about some titer being 1:1320, and said thats waaay high.

So, she gave me blood pressure medication for my Reynauds b/c she said it is not a good thing to have so many attacks. ( I have them daily, and some days are worse than others ) and she told me to keep an eye on my blood pressure, as its usually low to begin with; she gave me a small dosage of the BP medication. she told me if my pressure goes below 90/60 to stop the meds, wait a few days, and try again.

I have to go back to see her in 6 weeks. before that, I have to have a lung function test ( there is currently nothing wrong w/ my lungs ) just as a baseline, then repeat it every year.

Whe I asked about prognosis, she said everyone is different: some people stay like I am right now, and thats it.. they never get sick. others get a little sick, and others get very sick. She said there is no way to predict anything.

She said as for other treatment, there is nothing to treat now, except the Reynauds.

Needless to say, I am going to find a Scleroderma board and find out all I can. I am also going to explore things like diet, etc, because I know there are people out there who have "put their lion to sleep" ( whether the lion is Lupus or any other autoimmune disease ) and who are able to KEEP the lion asleep and stop the body from attacking itself. (No, I am not going to send some quack off of the internet $5,000.00 for some ancient chinese herb that is supposed to cure me ) but I am certainly going to educate myself as best I can; I will make myself a Scleroderma / Autoimmune expert, and I WILL find a way to heal myself.

Im not saying it will be easy, that it will all be perfect and rosy, but i am saying that I fully intend to do all I can.

Thanks for listening.

 
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Old 06-04-2009, 12:48 PM   #2
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Location: Henderson, NV, USA
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Triciah614 HB User
Re: UPDATE to "New and Very Scared": What the Dr Said

Connie,

You certainly have the right attitude to put your lion to sleep. I know that positive thinking and a positive attitude is what it takes to heal yourself.

I am like you, because I know that I have a terrible disease (lupus), but I feel very blessed that I am in the developing stages, found a doctor who will listen to me and help me find ways (other than throw steroids at me), to help myself.

Please let me know if you are able to find out ways that people made their diseases become inactive. I would love to try anything that is natural and something that you don't have to pay lots of $$$$ to get some all natural medicine.

Best wishes to you,
Tricia

 
Old 06-05-2009, 03:27 AM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: UPDATE to "New and Very Scared": What the Dr Said

Connie, I'm so sorry about your Dx of limited scleroderma. But I'm very hopeful that controlling & monitoring key things like blood pressure, etc. will greatly increase your odds of sidestepping major organ issues. (I think that's key for kidneys, as well as for the Raynaud's?) And I hope your lung function test goes really well. All my best, Vee

 
Old 06-05-2009, 06:15 AM   #4
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Conniel7777 HB User
Re: UPDATE to "New and Very Scared": What the Dr Said

for TRICIA and VEE,

Thanks again for your replies.

Tricia.. I am going to explore diet, because it seems like thats all there is.
Here is where I will be exploring..* link to commercial website, and website information, removed by hb-mod, moderator *

VEE.. I am just going to do whatever I have to do each day to PREVENT progression. Otherwise, I will just have to deal with things one at a time.

Thank you both for your support.


Connie

Last edited by hb-mod; 06-05-2009 at 08:21 AM. Reason: Please don't post links and/or instructions regarding commercial websites as per Posting Policy. Thanks.

 
Old 06-08-2009, 12:33 PM   #5
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Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: UPDATE to "New and Very Scared": What the Dr Said

connie ***big hug***
so altho it is not what you expected at least you have some way forward!
NO not one of us want an illness but rather the devil you know (???)
Hang tight & face it head on!
Good luck!
A

 
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