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#1 LunchLady58

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Posted 17 July 2007 - 09:15 PM

Hi everyone. It's 3:25am and I can't sleep. Thought I'd post.

For starters, my Mom died from Scleroderma in 2002, just about three years after waking up with swollen hands and feet. Took a long time for her to get a diagnosis (she was in her 70's), and even when she did, she got bounced around from one dr to the next. It went from outside(her hands) to inside (her GI tract). Shortly before she died, she found a sclero dr. He said that if she had come to him 2 years earlier, he could have helped her, but her disease had progressed so far there was no helping her at that point.

A few weeks ago, I came down with what I thought was a virus. Low grade fever, body aches, chills, fatigue. One morning I woke up, looked down and there were my mom's puffy hands. The skin on my legs and torso was red like I had a sunburn and my joints hurt like I was 90. Ok, so I freaked out and called my dr.

Knowing I was not one to come in often, and along with my family history, she ordered a plethora of bloodwork. Results: Ana positive, 1:640 titer, nucleolar pattern, low RBC, 54 Sed rate. She booked me with a rheumatologist. I'm going tomorrow.

Of course I went straight to the internet and started looking all this up and lo and behold, it points to sclero. Of course nobody in my family believes me. "Just get a B12 shot and you'll be fine." "Scleroderma doesn't run in families." My mom was in denial all throughout her disease, she didn't want to know what could happen to her, didn't want to attend a support group, didn't ask the dr questions, didn't change her diet and she ended up having a colostomy which started the downward spiral.

I am 48 and, if this disease is my fate, I am determined to know as much as I can so I can fight it. I may be in the very beginning stages that perhaps my mom went through at my age but just ignored or thought it was a virus or mild arthritis. Looking back I remember her taking naps and having aches and pains.

When my dr called me with my test results she said that something was definitely going on. "Whatever it is," she said, "We'll walk through it together."

Thanks for listening. :)
ANA+, Nucleolar pattern, anemia.

#2 jefa

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Posted 17 July 2007 - 10:29 PM

Welcome to the ISN Sclero Forums, LunchLady58. I am sorry for the loss of your mother and your own pending diagnosis of scleroderma. You have come to the right place for information and support. There are several forum members who would dispute the claims that scleroderma doesn't run in families. It sounds like you have the makings of a good team to fight this. Your doctor sounds like a real gem. I smiled when I read her words. Hopefully your rheumatologist will be cut from the same cloth. You will find lots of good information on the site's Medical pages. Here is a good place to start: What is Scleroderma? Make sure you take a written list of all your symptoms with you to your rheumatology appointment tomorrow as it is easy to forget once you are there. Your first appointment will probably consist of the doctor asking you lots of questions, an examination and a series of blood and urine tests.
Warm wishes,
Jefa

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#3 Sweet

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Posted 18 July 2007 - 05:43 AM

Hi,

Welcome to the Sclero Forums. I'm so very glad you found us. I'm really sorry about your pending diagnosis, you certainly sound like you have something going on. I'm also very sorry about your mom.

There are so many treatments out there these days and sounds like you've caught things early on, so I'm convinced you'll have positive outcomes!

We're here for you. I look forward to knowing you better. :)
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#4 LunchLady58

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Posted 18 July 2007 - 06:22 AM

Thanks for the warm welcome! :D

I have my list ready for the dr's app't tomorrow, copies of all my tests, etc.

My dr says this rheumatologist I'm going to see is well respected in her field so hopefully she will be thorough.

This site has been very helpful. I found the link to the Sclero Center in Philly (Thomas Jefferson Univ Hosp) which is 2 hours from me in case that becomes a necessity. I also located a local Lupus support group that says it welcomes anyone with an autoimmune disease to their meetings. Since I don't have much of a support system, something like that will be very helpful for me.

If it wasn't for my mom have sclero, I wouldn't even think of getting bloodtests for it, so catching it early is...well, forewarned is forearmed as they say, right? I may not see obvious symptoms for years, but knowing there's something afoot inside of me certainly puts a new light on things.

This may sound odd, but I started going through the stuff in my house and I donated 2 boxes of books to the library, 4 boxes of items to the Salvation army and brought 3 giant garbage bags of misc junk to the curb. Time to simplify, get clear and concentrate on getting/staying well.

Thanks for your replies and support. I'll report any news tomorrow after my app't.
ANA+, Nucleolar pattern, anemia.

#5 nan

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Posted 18 July 2007 - 08:14 AM

I am sorry you lost your mom to scleroderma. You have a good outlook. I hope that some of your questions can be answered with the rheumatologist. Let us know how it goes.
Nan

#6 Kamlesh

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Posted 18 July 2007 - 05:31 PM

Hi,
Warm welcome!

Sorry to hear you are having symptoms like Scleroderma. The last thing you want to do is to be in the denial phase. I had ANA positive, high SED rate, and some symptoms of Scleroderma since 1998. Doctors were looking for MS and lupus and not Scleroderma. My primary physician was under impression; it is extremely rare for people from my origin to have Scleroderma. My blood test was negative for Scleroderma. After over five years of denial and wild goose chase, my infectious dieses specialist suggested Scleroderma after looking at my facial skin and asked me to go Northwestern University in Chicago. Finally, I was officially diagnosed in April 2004, by this time; Scleroderma had already damaged my several internal organs including lungs and esophagus. It has been an uphill battle since then.

So my friend, please don’t be in denial and take an aggressive action as soon as possible.
Kind regards,

Kamlesh


#7 WestCoast1

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Posted 18 July 2007 - 07:02 PM

Hello LunchLadie,
I wanted to welcome you to the Forums. I am truley sorry to hear about your symptoms. It sounds like you have taken all of the steps neccesary for a proper diagnosis of what is going on.

Please stay in touch and let us know how you are doing.
*WestCoast*

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#8 LunchLady58

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Posted 19 July 2007 - 07:15 AM

Well, I just came back from the lab. The rheumatologist ordered another long list of bloodtests. After she filled 8 vials, the technician said, "I'll be rootin' for ya."
Yikes!

I was not terribly impressed with the dr. She was very casual and in serious need of a pedicure. LOL. She basically took all my info, read my previous test results, felt my hands, knees and feet, took my BP and that was it. She didn't order a urinalysis which I thought was odd.

Anyway, she told me not to get too worked up. It's possible that the flu-like symptoms I had were actually parvovirus and I would test ANA positive if that were the case. I looked that up, of course, and the symptoms pretty much described what I was feeling....joint pain, fatigue, low grade fever and rash on my trunk. That doesn't explain, however, the nucleolar ANA pattern. Hmmmm.

So I go back in two weeks. By then all the results will be in and paint a clearer picture.

Anybody have any info (in plain English?) on the parvovirus/ANA/Sceroderma connection? I don't understand the medical jargan in the articles I found.

Thanks!
ANA+, Nucleolar pattern, anemia.

#9 Sheryl

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Posted 19 July 2007 - 11:30 AM

LunchLady58,
Glad that you let us know about your appointment today. When you go back you should know what is going on with your body. I was told on my first apt. with my scleroderma rheumatologist. She went on reports from my gastro doctor. I went basicly for a second oppinion since my gastro doctor suspected I had scleroderma. I also then gave many vials of blood. I didn't give a urine sample until my second or third appointment. Let us all know when you go back in two weeks what some of your results are. Your doctor will then set up appointments for your PFT's and possible CAT scans or full body scans. We all stay busy with all of our doctor visits. Sheryl
Strength and Warmth,
Sheryl

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#10 LisaBulman

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Posted 19 July 2007 - 11:36 AM

Hello Lunchlady and welcome to the forums!

I am so sorry that you lost your mom to scleroderma and now you are having symptoms and testing. You have found the right place for information and support! We are all here to help in any way we can. I looked for a layman's article but could not find one for you. The medical jargon can be quite confusing. I am going to suggest that you keep a diary of all of your symptoms and how long they are lasting. So when you wake up in the morning and your hands are swollen and puffy, write it down and how long it is lasting. When you go back to the dr you can atleast discuss your symptoms and if there is anything new going on.

Please let us know how your appointment goes.

Hugs,
Lisa
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#11 janey

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Posted 19 July 2007 - 04:31 PM

Welcome LunchLady!
You have certainly found the right place. I'm so glad you're here, but very sorry for the reasons. I'm so sorry that your mother died from scleroderma and now you are seeing some of the same symptoms. I'm so glad you didn't go into denial, but instead jumped on it and started seeking a diagnosis. It does sound like you have a doctor or doctors that are really on top of things and working toward getting some answers. Once you have answers, you can start treatment.

You asked about parovirus/ANA/scleroderma connection: I'll try to explain, but I am certainly no doctor, so please get some clarification from the doctors. Parovirus is a a single-stranded DNA virus that has been found in scleroderma skin. Here's a link to viral infections that provides a couple of studies. ANA is anti-nuclear antibody that is an indicator that an autoimmune disease is most likely present. It does not specifically mean scleroderma, just autoimmune. There are other antibodies that you might be tested for to get closer to a diagnosis.

I hope this helps. Please keep us informed of your appointments and test results. You been given some great advice in the other postings. The journal is a must!

Big Hugs,


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#12 LunchLady58

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Posted 02 August 2007 - 09:22 AM

Hello again,

I have been reading the boards for the past two weeks while waiting for my test results. Seems they are telling me I have Lupus and not Scleroderma.
The conclusion being made because my ANA was pos, my Anti DNA was pos and my sed rate is high.

What made me so sick back in June, as it turns out, was/is Parvovirus which I tested pos for (and showing still active) indicating recent exposure.

Neg results were AntiSSA. AntiSCL70, Anticentromere, Antihistone and ENA.

I thought Lupus was so difficult to diagnose, especially without any outward showing signs, but they seemed pretty confident. I keep reading posts here of people who were told they had Lupus, and then it turned out to be Sclero. I asked about my ANA Nucleloar pattern and there was mention of possible signs of overlap, but that was it. So I don't really know what to think.

I am getting another Sed rate test in two weeks to see if I am still showing high inflammation, and, if so, meds may be necessary to avoid organ damage, I guess. Then another complete blood workup in 2 months with a follow up rheumatologist visit.

So today I was given a chronic disease diagnosis. Gee, and it's not even my birthday! How about that? :D

LL
ANA+, Nucleolar pattern, anemia.

#13 Sweet

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Posted 02 August 2007 - 10:54 AM

Hi Lunch Lady,

Sorry to hear about your diagnosis of Lupus. I have it too. It really is not difficult to diagnose. The labs rat it out fairly easily.

What is his plan for treatment?
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#14 LunchLady58

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Posted 02 August 2007 - 12:08 PM

Thanks for the hugs Pamela!!

Plan of treatment is "wait and see" since I'm not having any symptoms right now.

I actually saw the Physician's Assistant today and not the doctor. He was very matter-of-fact about it all. He flipped through the test results and said "You have Parvo, and" (flip, flip, flip) "oh, you have Lupus too." Just like that.

It really hasn't sunk in. I told my husband and he didn't have much of a reaction. Next week I'm going to a Lupus support group near me and get a feel for what I have ahead of me because I really don't know too much about it.

Take care.....
LL
ANA+, Nucleolar pattern, anemia.

#15 Sweet

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Posted 02 August 2007 - 12:13 PM

Hey LL,

I would talk with your doctor about being on Plaquenil if you are not already. It has the ability to slow the progression of the Lupus, if not stop it in it's tracks. Definitely worth it. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 janey

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Posted 02 August 2007 - 12:36 PM

LL,
Sorry to hear of your diagnosis of Lupus. I'm adding some hugs on to Pamela's.

We do have some information about Lupus on this website. Here is out lupus page. Lupus is also a connective tissue disease so sometimes people, like Pamela, will have both. This is referred to as overlap or mixed connective tissue disease (MCTD). Hopefully, you don't have the overlap.

Please keep us informed as to how you are doing. I hope the support group provides you with lots of good information, friends and support.

Big Hugs,
Janey Willis
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#17 jefa

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Posted 02 August 2007 - 07:27 PM

Hi, LL. Sounds like one of those good news/bad news days - let me get in on that group hug with you. It is good to get such a clear diagnosis so you can get on with it. It is good that you have already found a lupus support group. Do let us know how that goes.
Warm wishes,
Jefa

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#18 barefut

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Posted 02 August 2007 - 08:01 PM

Hi Lunchlady,

I am one of those initially diagnosed with "probable" lupus back in 2000.

I am glad and you are lucky to get such a quick diagnosis (Not lucky to have lupus but, well, you know what I mean!) So many people are frustrated for years without a diagnosis and like me, start to believe they are hypochondriacs. I was so relieved (at first) to have ANY diagnosis at the time!

I am also glad you have found a support group in your area. A good online support group is The Lupus Site. I spent a few years over there before my sclero diagnosis and then the moderators referred me to here. They didn't kick me out or anything! :lol: I still go back and visit time to time.

Also so sorry about your mom. You are doing the right thing being proactive!

Take Care,
Barefut

#19 LunchLady58

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Posted 02 August 2007 - 09:30 PM

Thank you everyone for you kind words and support. It's so comforting.

Barefut....I am, I guess, relieved to have a diagnosis, but that ANA nucleolar pattern will always be in the back of my mind. I still haven't said, "I have Lupus." Rather I'm saying, "Well, they're telling me I have Lupus." lol. Isn't the first stage denial? lol?

jefa.....yes, it is a good news/bad news thing. It's kind of like, well...the good news is we're not having a big hurricane tomorrow. The bad news is that it's going to rain for the next 20 years. lol.

janey...the Lupus support group meets this Tuesday night. I'm thinking that I may see some familiar faces. I know at least two other people in my area with Lupus.

Pamela....I hate the thought of taking any druugs, but I'll ask about Plaquenil.

I really miss my mom at this time. I think my Dad was more fearful of me getting a Sclero diagnosis than I was. He sounded pretty relieved when I told him on the phone. Then there was that pause........."So...what exactly is Lupus?" It really is hard to explain, even to myself.

Thank you again for all the support! Hugs right back atcha!
LL
ANA+, Nucleolar pattern, anemia.

#20 Sweet

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Posted 03 August 2007 - 05:21 AM

Hi LL,

Here a link about Lupus that may answer some of the questions you have.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)