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#221 pattimarzano

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Posted 25 November 2007 - 01:12 PM

Hi, I'm new to this message board. I am a member of the PH message board and the squamus cell carcinoma message board and now I've found you. I was diagnosed with scleroderma and PH about the same time in 2006 when my right heart failed. We were doing a PET scan to see how bad the scarring was in my lungs when we found the cancer. So now I'm dealing with all three terminal diseases and just need some support some days. Thanks for being here.

#222 Sweet

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Posted 25 November 2007 - 03:17 PM

Hi Patti,

Welcome to the Sclero Forums. I'm really glad you found us, but sorry it's due to your multiple diagnoses. You have come to the right place for support! You will find a wealth of information here, in addition to some great friends.

Again, welcome.
Warm and gentle hugs,

Pamela
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#223 constance

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Posted 27 November 2007 - 06:48 AM

Hi Everyone. My name is Constance (Connie) and I am just now going through diagnosis. I am 53 years old and I already know I have Pulmonary Hypertension. My treadmill test showed a BP of 209/60 when I finshed it. I have Shortness of Breath with most any exertion. I have one hand that has a couple of trigger fingers to it and a couple of deformed knuckles now. My hand feels tight and swollen a lot. I have been diagnosed last year with Hashimotos Disease. This is all so upsetting for me. I am afraid by most everything I read. I am seeing a pulmonologist Thurs.. He probably will order some kind of a CT scan to look at my lungs. Yestrerday I had an eco of my heart and haven't heard the results. My guess is that I have systemic scleroderma. I feel like I really need a support group around this. I live in Santa Rosa, California. Well, thanks for letting me air my fears at what is only now unfolding for me. I just wish there was a simple blood test to tell me what I have, NOW.... I so appreciate any thoughts and comments and just the fellowship will help. I had never even heard of any of this before so I am kinda shocky about it all..... :(

#224 Sweet

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Posted 27 November 2007 - 09:53 AM

Hi Connie!

Welcome to the Sclero Forums. So glad you are here. I'm sorry to hear about the symptoms you are having, and your impending diagnosis.

You've come to the right place for support, and best of all it's from people that suffer from the same illness, so we can truly relate!

Look forward to knowing you better.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#225 jefa

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Posted 27 November 2007 - 10:35 AM

Hi, Patti. Just wanted to welcome to the forum and look forward to hearing more from you on the boards. Finding out about the cancer must have been a real shocker for you. Pulmonary Hypertension is often a complication of scleroderma. I know it's hard not too, but try not to think of these diagnoses as terminal diseases. Think of them as challenges which you can beat with the help of a good medical team, a positive attitude, an open mind and a good support structure. Keep us posted on your progress.
Warm wishes,
Jefa

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#226 jefa

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Posted 27 November 2007 - 10:40 AM

Hi, Connie, and welcome to the forums. As I mentioned to Patti, Pulmonary Hypertension isn't a stranger to scleroderma. It can be very scary when you first start hearing all the words being bandied about. If you can, try to relax and wait to hear the news from your doctors before jumping to too many conclusions. You will find a wonderful support structure on the forums. I look forward to hearing more from you soon.
Warm wishes,
Jefa

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#227 beanie

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Posted 02 December 2007 - 03:59 PM

Hi. Glad to have found this post. Facing some uncertain changes in my status and need some support and info.

About me, I am 38 and was diagnosed when I was 16. Had many years of Raynauds before that, but no one knew what was the matter. My dentist, of all people, was the one who brought scleroderma up to my mom and made a referral for us. He had seen a presentation about the disease and had thought instantly of me. Finally, a diagnosis and then fear. I remember wondering as a teen, if I would get to be a wife and a mommy. At the time of diagnosis, my status was really good. I started having some esophogeal problems at age 21 and now go every 6 months for dilation because of stricture. Around age 26-27, I started having lung involvement and blood pressure problems. I have been married for soon to be 12 years and after 2 miscarriages, was blessed with 2 boys, one is 7 and the other is 4. Up until about 5 years ago, I had felt fairly good. Now, I feel like I am falling apart fast. My lung functions last month had decreased significantly after being stable for about 3 years. I am having some more problems with my pulse and blood pressure. My rheumatologist wants to talk about starting me on Cytoxin this month when I see her. I am scared. I work 2 part-time jobs but average 20-25 hours a week. My husband is on disablilyt himself because of depression. I really don't get much support or help at home. Like I said, I am to have found you all. I live in Indiana. That is just a bit about me. Look forward to getting to know you all and hearing about your health and stories.
Michelle

#228 j3ss

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Posted 03 December 2007 - 06:17 AM

Hi everyone. I've been browsing the site off and on for a while now, and I've finally decided to join the forums.

My name is Jessica. I'm 20, and was diagnosed around age 7. A lot of the early developments are hard to remember, since it all happened when I was too young to really understand what was going on. Anyway, I've got some type of morphea running from the top of my foot up to my hip on my right leg. Depending on which dermatologist you ask, it's either generalized, linear, or localized. I think they tend to go with linear these days, but either way, it's definitely not systemic. Of course, there's probably always a chance for it to change later, but all my blood work has been coming back fine so I try not to worry about it.

(For what it's worth, my dad was recently diagnosed with rheumatoid arthritis. Some people tend to believe there's a connection between the two.)

#229 Sweet

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Posted 03 December 2007 - 10:49 AM

Hi Michelle,

Welcome to the Sclero Forums love. We are so happy you have joined us. I'm sure sorry it has to be because of illness.

You've come to the right place for support. We all "get it" and will be here for you. So, join in, post often, ask questions and we'll help each other out.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#230 Sweet

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Posted 03 December 2007 - 10:51 AM

Hi J3

Welcome to the Sclero Forums! I'm sorry to hear about your morphea. We have many many members will morphea, so you'll have a lot of support. I'm so glad you've decided to join!
Warm and gentle hugs,

Pamela
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#231 danceswithcats

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Posted 07 December 2007 - 06:34 PM

Hello Everyone!

It's very hard to read the tough stuff that so many of you are going thru ... some of it so familiar to me and some of I am not familiar with at all so I am getting quite the education! I thought I knew this disease well but it turns out, not so much!

At 16, I was told (by a gyno of all things! LOL) that I had Discoid Lupus (yup ... had the butterfly rash with the fatigue and the joint pain). Several years later, that went into remission and I was told that I now have Fibromyalgia and should stop working and file for Disability. I fought my rheumatologist on that issue for 5 years but then it became obvious that I had no choice. It took another 5 years to GET the Disability. Before that happened, I was diagnosed with Systemic Lupus. Had that for 6 years.

It was at that time that I was diagnosed with Mixed Connective Tissue Disease at the Johns Hopkins SD Clinic (Dr. Wigley). He told me that when the Lupus goes away and likely it will with MCTD, it won't come back. Unfortunately the SD took it's place. Now, seven years later, I have the SD active with occasional bouts of the FM, the always present Raynauds and the most prevalent symptoms of fatigue in the extreme and all the GI stuff giving me six fits, plus the anemia and the PAH.

Just had my first endoscopy. diagnosed erosive esophagus, same with stomach so bleeding in both (hence the constant anemia). Have had blood transfusions for that and am getting monthly B12 injections, had them weekly for awhile. Taking omeprazole 2x a day, Tracleer, Levothyroxine, Megace to help the appetite (yes have a LOT of trouble swallowing and without the Megace, don't eat enough to keep a bird alive). I also have the spontaneous vomiting about 2 hours after laying down (if you can call it laying down as I have to sleep near-sitting up using a foam wedge and 3 big fat pillows). I freeze even in summer and use the heating blanket and heating pads to try to keep warm.

So that's pretty much me. Oh yeah. And I have Osteoporosis and fractured a hip last year. So I use a can and the wheelchair as they tried to fix it but she won't fix. No good bones to attach a prosthesis to so I'm waiting it out. It takes the soft tissue years to heal esp. what with having MCTD.

In a couple of weeks I'll be 55. I had some years there in the middle when I was in great shape physically and I enjoyed that tremendously but it's been a very long time ago now. I'm glad to have found this group. I'm learning a lot and it's great to know that there is a community out there that UNDERSTANDS!

#232 Sheryl

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Posted 08 December 2007 - 01:25 AM

Danceswithcats, weclome to our forum. I am glad that you have decided to join us. We all are learning so much about the disease process, effects, medication reactions, an learning to bond with others in the same boat. We are come from different walks of life but can relate and help each other through difficult times. I am also 55 and at the moment only have Sestemic Sclerosis with Crest. No Lupus or Fibro. I haven't heard anything about Megace. It helps you to want to eat or to eat more? I think there are several people on this board who might wish to learn a bit about how that works for you. Since, they never appear to be hungry or just don't have an appetite. Jump in and tell us a bit about yourself whenever you are ready. Sheryl
Strength and Warmth,
Sheryl

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#233 danceswithcats

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Posted 08 December 2007 - 06:19 AM

Sheryl thank you so much for the welcome. I have noticed that several other posters have trouble with eating. I looked up the Megace and it is an appetite stimulant. It is used even in the care of AIDS patients as malnutrition is a constant concern with them. It really does help me to eat something. Without it, food just makes me go 'ughhh' LOL I know ya'll know just what I'm saying. For a very long time, the only thing I was surviving on was cans of Ensure, four a day. It did help and it got me thru and I didn't mind the taste but then they changed the recipe! I HATE when they do that! And now I can't stand the taste of the stuff so I'm very glad for the Megace. I can't eat a lot, still eat such small amounts but at least I'm eating 3 meals a day.


I wish all here blessings and good fortune and better health!

#234 Sweet

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Posted 08 December 2007 - 10:29 AM

Hi Danceswithcats -

Welcome to the Sclero Forums. Boy I a so sorry to hear of your multiple diagnoses. It's hard enough to deal with just one! You've come to the right place to find information and to network with others who are just like you.

Again, Welcome!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#235 Sheryl

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Posted 10 December 2007 - 05:02 PM

j3ss, I just want to welcome you to our group. I was ready to call it a night when I came across your post. I didn't want to miss welcoming you to our little family. We have a great bunch of people here. You will get to know most of us quickly. Sheryl
Strength and Warmth,
Sheryl

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#236 raelan55

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Posted 13 December 2007 - 03:52 AM

Hi my name is Rachel, I am 43 years old and just recently diagnosed with Raynaud's (about 7 months ago). So far, all of my testing has shown negative for the other indicators that come with Raynaud's but my doctor is watching me carefully and following up with testing in case there may be "more to come" because I am currently exhibiting chronic joint hip pain (that has not been fully diagnosed yet), low iron and low energy and some inflammation in my blood tests which could possibly point to other autoimmune illnesses. I found this group because I am very interested in managing the Raynaud's. It started initially in my fingertips and now it has progressed down the second joints in my fingers and now my toes. This is my first winter with Raynaud's and I live in Northern Virginia area. I am very challenged with learning how to "stay warm" and finding solutions that work for me. I have also found that air conditioning, slight room temp fluctuations and moving from one room to another, as well as stress (and I got plenty!) sets off an attack. Your forum has been outstanding in finding helpful tips. I am very open to natural remedies, diet (if that can help) and possibly meds that can assist when the normal methods do not work. Thank you for this forum and I will be reading frequently, it is so wonderful to find a place I can get more information on my new diagnosis and coping with Raynaud's. Thank you!

~raelan~

#237 Shelley Ensz

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Posted 13 December 2007 - 03:57 AM

Welcome to Sclero Forums, Rachel! I'm sorry you have Raynaud's and an uncertain diagnosis. But I'm glad you've found us as you'll meet many caring people here and get some of your questions answered, too.
Warm Hugs,

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#238 Sweet

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Posted 13 December 2007 - 01:01 PM

Hi Rachel, and welcome!!! I really look forward to knowing you better. We have a great bunch of people here.
Warm and gentle hugs,

Pamela
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#239 Guest_SADIE_*

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Posted 10 March 2008 - 07:58 AM

Hi, My name is Sadie,

I have had Diffuse SD for 18 years now. Started getting sick when I was a junior in high school. Its in most my organs except for my kidneys. I'm very thankful that it has stayed out of them! I have a feeding tube. I am a fighter!

Sadie

#240 jefa

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Posted 10 March 2008 - 11:13 AM

Hi, Sadie, and welcome to the ISN Sclero Forums. I am sorry to hear about your long experience with sclero, but hope you will find some support among this great group of members. I look forward to reading more of your posts on the forums.
Warm wishes,
Jefa

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