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#1 Nina

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Posted 20 June 2008 - 02:34 PM

Looks like I may have found a fourm where I can post. I'm new, just joined today. I have been ill for over ten years ~ and just recently found lots of information through your site.
I was originally diagnosed with Fibromyalgia (1998). Because there were two members of my family (an Aunt and an Uncle) who had "Lupus" the rheumatologist said I "may" have that. Because I have struggled with "depression" my entire life, I am afraid my doctor's have always considered that first. At least that's how I feel. At one of my routine visits to my PC (primary care) physician, my doctor mentioned that my fingers looked puffy and discolored (purple and white). She told me, very casually, that I had Raynaud's Syndrome. Because she didn't act concerned about that, neither did I. I was at the time experiencing problems with Anemia. I was extremely tired and weak. I ended up in the hospital (1999) New Year's Eve. I received three transfusions initially and was told to see a Gastro. Specialist.
I did that and was scheduled for a "colonoscopy" and an "endoscopy." I was told at that time that I had "Watermellon Belly." I actually thought that was a joke, I did not know that was a medical term. I found out recently (through this site) that the term is "Watermellon Stomach." At any rate, I spent the next 7 years getting 'endoscopy" after "endoscopy" ~ transfusion/infusion after transfusion/insusion. At some point, my PC physician recommended an "IRON" infusion, that actually worked and I stabilized for about a year.
I also went to an new rheumatologist who told me that it appeared that I had "Scleroderma" not Lupus. She told me that my symptoms may not present themselves for years and they may present themselves immediately. I left even more confused.
Long story short: My problem (bleeding in my stomach) returned and once again I ended up in the hospital (hemoglobin 6). This time I was seen by a surgeon who told me that it would be necessary for me to have a portion of my stomach removed. They did explain that my condition had worsened and was obviously not responding well to the "procedure" (can't remember the name, but they used a tool to burn my blood vessels in an effort to stop the bleeding).
I had the surgery done in January (2008) ~ and now I'm finding out that the Sclero may have played a part in my condition.
I hope I have made a little sense here, I'm not feeling well again and I'm scared. All the information is overwhelming and I am very, very angry that my doctors have not put some of the pieces together. I just want to figure out what to do next.
Thank you for listening to me. I'm probably going to go to bed now, but I will answer any questions you may have (tomorrow.)

#2 Nina

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Posted 20 June 2008 - 03:14 PM

I truly feel like I'm loosing my mind. The more I read, the more I realize that my doctors don't care about ME at all. None of them have linked any of my symptoms ~ I did this on my own. What are we paying these guys for? This is just crazy.
Sorry for the rant, but I just cannot believe there are so many of us out here ~
Right now I'm having a bad few days ~ extremely tired ~ and I don't want to go through this. I'm tired of being tired, and my friends think I'm crazy. I'm just so frustrated...
Thank goodness I found this fourm ~ this site ~ at least now I have somewhere to go.
Thank you to everyone for being here...
I'll post frequently, I promise~

#3 jefa

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Posted 20 June 2008 - 10:48 PM

Welcome to the Forums Nina. I see you are getting involved right away and that's the best way to get into what the forum is all about - sharing information and support. We all have our bad days and shouldn't feel guilty about the occasional rant or frustration. Diagnosing this disease is not easy, especially for doctors who are not familiar with the specifics which is why we recommend seeing a scleroderma specialist or at the very least a good rheumatologist who, along with your general care physician and an educated and aware YOU, can possibly pinpoint a diagnosis, but will most importantly deal with the individual symptoms as they arise.

I look forward to getting to know you better.


Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#4 barefut

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Posted 20 June 2008 - 11:30 PM

Welcome Nina ~

Boy I can tell you I went throught the same thing after finally being diagnosed. The more I learned on my own, the angrier I became at my doctor for not having connected the dots. After feeling like a hypochondriac, I finally went to another doctor who referred me to a sclero specialist after my second visit with him.

If I had to defend Family Practioners I would say that since we are a rare group, and since a lot of sclero symptoms mimick other things, may come and go, and present themselves over many years, it would be hard for them to solve the puzzle that is scleroderma unless they had seen it before or were really, really on the ball.

That is not to say that you are not justified in being angry however. You can't help thinking that if you were diagnosed earlier, you could have started a treatment sooner and saved yourself a lot of irreversable physical grief, as well as bucket load of emotional anguish.

I am so glad you have found our ISN forms. You have come to the right place for the most up to date information and the most caring, understanding people anywhere.

Keep posting and I am looking forward to getting to know you better.

#5 Snowbird

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Posted 21 June 2008 - 01:38 AM

Hi Nina

I'm glad you have found us. This disease is definitely very trying at times to say the least. It also manifests itself with so many symptoms that it is hard to diagnose which adds to its rarity and the length of time it takes sometimes to connect the dots. I know my family doctor says that I need to be careful not to blame everything on the scleroderma (meaning it could be something else and he won't want to mistake any other disease/complication, I do know I've never been luckier as to have him, he's so good)...so treating every symptom is the way to go. Irish does have a good point, we all need to move forward with what we know as we discover it and do the best we can to get through the rough times. We're all here for you and they say there's strength in numbers, so together, we'll manage somehow. :) :)

Keep posting and asking questions. There's always someone here that can help.
Sending good wishes your way!

#6 Nina

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Posted 21 June 2008 - 02:56 AM

Thanks so much to everyone who answered my posts. Right now my sinus problems are at their worst, not sure if that's connected or not. And my sleepiness has returned, I slept almost all day yesterday and now today I'm feeling the same way.
The reason I did not continue going to the rheumatologist was that I only have "Medicare" and this particular doctor requires you to pay the co=pay up front, before you are seen. In Delaware we only have three to five Rheumatologist ~ and I've seen them all. The woman (the latest one who suggested Sclero.) seems more on the ball than the others. So that is who I will call on Monday morning. I'll get the $35 somewhere. I can't go on like this. I have a lot of other symptoms so what I think I'll do is start a journal to document everything.
I'll be back ~

#7 nan

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Posted 21 June 2008 - 03:04 AM

Nina,
Welcome to the forum! I too was diagnosed with fibromyalgia in 1998. I also have watermelon stomach and have had two major bleeds. I had that argon plasma coagulation procedure twice and so far so good( that was a year ago). I am so sorry to hear that your watermelon stomach is so severe. I can't imagine having part of my stomach removed.
take care,
Nan

#8 Sweet

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Posted 21 June 2008 - 07:11 AM

Hello Nina and welcome!



I'm so happy you have joined us. It sounds like you have dealt with a lot and for that I'm sorry. You will find a wealth of information, support and good ole friendship here. We're glad you're here!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Nina

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Posted 22 June 2008 - 06:04 AM

Hi Nan and thanks for your reply. I'm so glad your argon coag. has worked. I had that done five times over seven years. Between that and the iron/blood transfusions, I felt like I was in the hospital every other month. I guess what frightens me now is the fact that I "thought" my problems would be solved with the operation. I lost 40 pounds, which I truly needed to do, and I felt on top of the world. But only until recently, about four months I guess, now I'm feeling tired again and that's NOT a good sign. My fear is, what will they tell me next?
Tomorrow is Monday, I'll call and make an appointment with the rehumatologist. In the meantime, I'm reading all that I can find.
Thanks once again,

#10 Nina

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Posted 22 June 2008 - 06:08 AM

Pamela ~ thanks so much for your reply. I am trying to read as much as possible. I'm even printing information out to GIVE to the doctor! Why is it we have to tell them? I guess my idea of a doctor is way off from the reality of it all. My doctors don't even talk to each other, or share notes, nothing. I used to ask that my blood work be copied to all my doctors (primary/rheumatologist/gastro) ~ dummy me, I thought they all cared. Not once has any of them ever mentioned that "watermelon stomach" COULD be related to sclero.
Oh well, now I know and from here on I will act accordingly.
This group is wonderful, and I am thankful that I found it!
I think I'm going to try to write my story and post it, that would probably do me some good.

#11 Peggy

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Posted 22 June 2008 - 02:59 PM

Welcome! I know your frustration as it took a year of going from doctor to doctor and test after test. For a while I am sure they thought it was all in my head but I knew something was going on and I was getting sicker and sicker. From this experience I know now that we have to be our own advocate and follow how we feel and press the doctors to listen to us and to not settle for them to just pooh-pooh us. Now I deal with a sclero specialist due to having the diagnosis so the problem of not being listened to is hopefully solved. I'll find out tomorrow as I go to my quarterly appointment and I have quite a few questions and am so concerned about how I am feeling and what is going on.

I just wanted to welcome you. You won't find a better group of people than the people who post here. They are always there to listen, to help and to advise. I don't know what I'd do without it.

Warm hugs,

Peggy

#12 Nina

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Posted 25 June 2008 - 12:59 PM

Thanks Peggy, I feel right at home here. My problem is getting started. I don't have a lot of time as I am working part time right now. By the time I get home, get through dinner etc. well, then I'm ready for bed. EARLY too, like around 7:30 or 8 p.m. I'm beat and hardly feel like posting. I'm going to try to join in on the different threads, particularly if I see something that I can relate to.

Thanks for the warm welcome ~ I'll be around. I'm trying to write my story to fully explain where I've been over the past seven years. Oh, it's actually eight years going on nine....how time flies!! Particularly when You're having fun!!! Right?

Much love,

Nina

#13 Guest_Sadie_*

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Posted 25 June 2008 - 02:33 PM

Welcome to the board! I'm so happy that you found us! Like others have said, you will find good info on here.
Sadie

#14 debonair susie

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Posted 25 June 2008 - 03:04 PM

Hi Nina,

It makes complete sense why you feel as you do :blink: I hope that sooner, rather than later... you and your dr(s) are able to get you on a better track. Hopefully, the anemia problem can be dealt with, which would help ALOT!
When dealing with health issues, it's rough enough, without having anemia.

Having Fibromyalgia and Scleroderma myself, I can understand that variety of pain/discomfort.

With the above health issues, you've come to a great forum of folks who share commonalities withyou and will be so supportive, as well as caring.

We are a family that is glad you have "found" us :rolleyes:

soft Hugs,

Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#15 Shelley Ensz

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Posted 25 June 2008 - 04:39 PM

Hi Nina,

Wow, you have really been through the mill. I'm not surprised as so many of us have gone through years of misery before the dots were connected...but my goodness with Watermelon Stomach and all your other symptoms, what were they thinking to not think you have scleroderma? Okay okay, I'm not a doctor, I have no medical training at all, bladda bladda bladda...but, I'm glad you see the picture yourself at long last.

I agree with Jefa/Carrie, too...you're probably going to need a scleroderma expert to get your diagnosis, care and treatments on the right track.

Welcome to Sclero Forums. I'm sure you'll feel right at home in a big hurry!
Warm Hugs,

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

#16 Margaret

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Posted 26 June 2008 - 04:24 AM

<<Okay okay, I'm not a doctor, I have no medical training at all, bladda bladda bladda...>>

Shelley ,

I am in awe, and smile, that you always write this because you may not be a doctor but you are a giant wealth of information that many doctors don't even know/have available. Thank you!!!

Take care, Everyone.
Margaret

#17 smac0719

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Posted 11 July 2008 - 04:57 PM

Nina,

Sorry I'm just getting to post, but I has a spinal block onthe 30th that didn't go as I thought it would. I was in bed for almost a week unable to walk and get around, but I'm much better now.

I was recent diagnosed with G.A.V.E. (had an earlier post about it). I was amazed that my Gastro didn't identify it. My Sclero specialist got the report from my Endo from my Gastro and instantly knew. The intersting thing is that my iron level was low the last time I had bloodwork done. I'm actually behind for my next draw so I'm going to make it a point to get to the lab on Monday. I've been feeling more tired lately so I hope that's not a sign of anemia.

I hope you start feeling better soon and the new Rhuemo works out for you.
I may have Scleroderma, but Scleroderma doesn't have me!

#18 Nina

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Posted 12 July 2008 - 09:56 AM

Hi Smac and thanks for your reply. Please do stay on top of that. I really just thought my gastro dr. was making a joke of my stomach. I didn't pay any attention untill I was put in the hospital with hemoglobin of 6. That all started in 2000 (New Year's eve in fact). It then took five to six procedures (lasering the blood vessels that were weeping to stop the bleeding) that didn't work, before I finally ended up having a portion of my stomach removed.
I'm not real sure there is much they can do other than the laser (argon) procedure. But stay on top of it ~ and insist on blood work when you are feeling weak. Yes, it is related to the bleed and anemia. My prim. care doctor kept calling it "Iron Anemia" ~ which it wasn't. I even got iron infusions, oddly, they did help for a time.
Can't wait to sit down with the rhuemo doctor ~ July 31st...
Nice to talk with you, and glad you are feeling a little better.
Much love,
Nina