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#1 smac0719

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Posted 05 February 2007 - 02:59 PM

Hello. I have recently been diagnosed with Diffuse Scleroderma. This has occured after 2 years of suffering and testing. My Dermatologist made the diagnosis after the 3rd skin biopsy and I just came back from seeing a Sclero specialist in Charleston, SC. I've been looking for a support group in the Tampa, FL area, but am not having much luck.
I may have Scleroderma, but Scleroderma doesn't have me!

#2 Heidi

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Posted 05 February 2007 - 03:28 PM

Hi and welcome to the forums!

I am so glad you have found us but sorry it is because of your diagnosis of diffuse scleroderma. As hard as it is to accept, I am sure it is a relief just to know what is going on. It is always nice to finally get a diagnosis.

You asked about support groups in Florida. Here is a link to scleroderma support groups in the U.S. Hopefully you will find one near you.

I hope you will post more and help us all get to know you better. I am sure you will find everyone here very warm, supportive, and encouraging.

Warm wishes,
Heidi

#3 Shelley Ensz

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Posted 05 February 2007 - 03:29 PM

Hello Smac,

I'm very glad that you have found us, but sorry it is because you have diffuse scleroderma. It's always such a catch upon being diagnosed -- on the one hand it is super to have answers, at long last. And on the other hand, it can be quite daunting at first.

But we are here for you, and delighted that you have joined us.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#4 smac0719

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Posted 05 February 2007 - 03:40 PM

Thank you. I must say, some of the information has been hard to read and I am feeling a little overwhelmed. A previous primary care physician thought it was Sclero all along, but a lot of my tests were inconclusive. I carried a high ANA (=640) for over a year, but nothing else was showing positive. I went to 3 rheumatologist's, one of which was a specialist at Shand's in Gaineville, FL. HE told me I didn't have an auto immune disorder at all. I thinK I'll drive by a lick my tongue next time I'm driving through that part of the state :P. From what I've read, there seems to be a lot of support and knowledge. I look forward to getting to know each of you.
I may have Scleroderma, but Scleroderma doesn't have me!

#5 Sweet

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Posted 05 February 2007 - 04:06 PM

Hello Smac,

Welcome to the slcero forums! I'm really sorry it's due to you being ill. You will find a wealth of information here, and people who truly understand what you are going through. I look forward to reading more of your posts!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 LisaBulman

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Posted 06 February 2007 - 02:22 AM

Welcome Smac!

I am happy to see you have found us here, but I am so sorry with your recent diagnosis. At least now you know exactly what you are dealing with and where you should go from here.

Please keep posting! Ask questions, answers questions, get support or lend some where you can.

Hugs,
Lisa
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#7 nan

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Posted 06 February 2007 - 04:07 AM

Welcome! I am sorry about your diagnosis,but you have come to the right place. I just went to Hopkins to get my diagnois. I have CREST scleroderma, Sjogren's, and fibromyalgia. It's hard to accept, but I like knowing what I am dealing with.. Take care of yourself!
Nan

#8 smac0719

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Posted 06 February 2007 - 03:11 PM

Thank you all again. It's good to know people who are dealing with the same or similar issues. It took a while for the diagnosis, but I think my persistence was the key. I knew something was wrong and have gone through 2 primary care physician's, 3 Rheumos and 2 Dermatologists. My Endo is the only one who has been consistent (I am also diabetic). My current dermatologist & rheumatologist have a good working relationship. I just need to find a new primary care physician who can see me and has knowledge of sclero. I must say reading some of the posts last night was so overwhelming. My initial symptoms were fatigue and stiffness in my hands/feet began Fall of 04. My primary care physician at the time thought lupus because I also had a low positive ANA after some blood work. I also have a maternal cousin and a paternal aunt with lupus and I had a history of pleurisy. We tried many NSAIDs, but none of them worked. I got to the point that I could barely walk or use my hands. I then tried an herbal supp. It actually worked, but then I developed SOB and couldn't walk 100 ft without being totally worn out. I ended up in the hospital and underwent a full cardiac workup the week of holiday 04. I was released without a diagnosis, but stopped taking the herbal supp. I think that was the key because the symptoms cleared. I'm asthmatic and am allergic to all grass, trees, people :D , etc. I realized that I was probably reacting to the herbal supp because it is ground barley grass. Go figure. Well I dumped that primary care physician because I felt she should have known of the potential effect. I found another who was awesome and very proactive in finding out what was wrong with me. I'm prescribed Cymbalta which helped initially, but stopped working. Spring 05 I started noticing hyperpigmenation on my arms and feet. It spread to my legs and then swelling occurred in my arms (wrists to elbow) and then tightness. I then developed an intermittent burning pain in my arms. All this has been going on since Spring 05 with no relief. After seeing two different rheumatologist's from 12/04 to spring 05 without success and many blood tests later, my primary care physician referred me to a specialist at Shand's which is a specialty/teaching hospital here in FL. He had no clue and sent me back home with a return appointment 6 mos later. I'm hospitalized Spring 05 with severe dizziness. Underwent a battery of tests and a Neuro consult. Can't find out the cause. Summer of 05 I am very concerned with my skin so I see a dermatologist and had the 1st biopsy. I was told it was consistent with morphea. Well, I'd done the research so I knew morphea was hardness of the skin. Nothing new. Still more blood work and nothing is changing. Just a positive ANA. Winter 05, my primary care physician closes her practice and I move to a new primary care physician. She immediately says she thinks it's Scleroderma, but neither of the rheumos can agree. Blood wise, all I have is a severely positive ANA. More blood work in 06 (I have fed a country of mosquitoes and their descendents). My skin is still very tight, I can feel the hairs on my arms moving at any given time and they hurt like the devil. It hurts for people to touch my arms. I can't wear bracelets or sleeves with elastic. I have to put lidocaine creme on my arms to have my blood work drawn because it hurts so bad. I find a new rheumatologist who is more holistic in nature. but is truly trying to find a diagnosis. I'm told I probably have fybromyalgia and I'm given minocin and am on Lyrica. I go back to the dermatologist because now I have this area on my stomach that's hard and raised with a funky texture. I have another biopsy and again am told morphea. I see the rheumatologist "specialist" at Shand's again to be told he doesn't know what's wrong but I don't have an autoimmune disorder. I just have autoimmune thyroid disease (yes, I also have a goiter on my thyroid). What???? How do I NOT have an autoimmune disorder, but auto immune is in the title of what you're telling me I have. I'm told I don't need to come back to see him because he can't help me. I am referred to a different dermatologist 12/06 who does the 3rd biopsy. It comes back positive for Scleroderma. Because of the thick skin and hardness all over my body, the dermatologist suspects it's systemic. She knows someone who knows Dr. Silver ant Medical University in South Carolina and they get me in to have a full work-up with him. I had the PFT's, echo and CT to find my lungs and heart are OK for now. I am going to see a Gastro in a couple of weeks for the bloating, gas, nausea and reflux. I've been on reflux meds for years, but never thought it could be associated with an autoimmune disorder.

I apologize for the lengthy story, but I am soooo tired and from reading some of the posts, I'm not the only one going from dr to dr trying to find answers. I am currently on methotrexate, plaquenil and folic acid for the sclero. Let me know your experience with these meds.
I may have Scleroderma, but Scleroderma doesn't have me!

#9 Heidi

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Posted 06 February 2007 - 03:26 PM

Wow!

It sounds like you have been through the ringer trying to find out what was going on. I am glad you have finally found a doctor who seems to know what is going on. Do the methotrexate and plaquenil seem to be working for you? How long have you been taking them. I have been taking plaquenil for about 3 1/2 years now and it has worked wonders with my muscle fatigue. BUT, it works very gradually and takes about 4-6 months to totally kick in.

Warm wishes,
Heidi

#10 Sweet

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Posted 06 February 2007 - 03:43 PM

Wow, Hon, you have been through the wringer for sure! Sounds like you are on the right track now at least.

Do you might me asking how high your ANA was?

I've been on plaquenil for 6 years, it truly helps, and I take and NSAID off and on. I do have heavier pain medication if I need it but don't take it often.

Hang in there!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 kiwimum03

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Posted 06 February 2007 - 03:44 PM

Welcome Smac,

and thank you so much for sharing your diagnosis journey with us.
I am still currently trying to get a diagnosis, and while reading your diagnosis, so many of your symptoms rang true with me, and it gave me hope that I will be able to be diagnosed in the near future.

You will find a wealth of information and so many wonderful caring people on this website, you will visit it often, sometimes I feel like I live here!!!

take care,
Hugs,
Irene

#12 JG07

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Posted 06 February 2007 - 03:51 PM

I am going for my results withrheum tomorrow - I have already been told via phone that I have Sclero - and pulmonary fibrosis - she says they will give me further info @ appt - I have had 2 collapsed lungs in the past 2 years -1 required a chest tube - have had raynauds for about the same time -I have pleurisy - again - I am so tired and my leg muscles and calves hurt constantly - I have no appetite - Have lost about 15 lbs in the past year - can barely make it thru work = and so cold all the time - I also have a constant tightening in chest - I am very nervous and don't know what to expect -

#13 kelowna52

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Posted 06 February 2007 - 03:55 PM

Wow is right! You have definately been through the ringer. I found your story very interresting. Innitially, this started for me on my feet, a burning, itching pain on both feet. I had two differant biopsies done, by two differant Dermo's and both came back Morphea. And the way you described your whole ordeal was similiar to all of the rig more roll, I went through. But at least now you know what's going on. And now like the rest of us here, you deal with each problem as it comes up, day by day and try not to think past that. Just try and focus on getting well and trying what ever is needed to make that happen. Plus remember, we are all here for each other.

Take Care

Jackie S.

#14 smac0719

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Posted 07 February 2007 - 02:33 PM

I have only been on this course of meds for 2 1/2 weeks. I think it's starting to work as the pain in my arms is not as strong and my arms aren't so tight. The stiffness is still prominent in my fingers. I have a co-worker with Reynaud's and RA who is on the same course of meds. She has found some relief. I'm glad to hear I may have some relief coming. I am still working full-time, but I'm so tired. It's like my body gives me just enough energy to work on and by the weekend it shuts completely down.
I may have Scleroderma, but Scleroderma doesn't have me!

#15 smac0719

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Posted 07 February 2007 - 02:35 PM

My ANA was at 640 the beginning of January. My CRP level was also high along with something else that's indicative of swelling.
I may have Scleroderma, but Scleroderma doesn't have me!

#16 smac0719

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Posted 07 February 2007 - 02:42 PM

Thank you Irene. It was a little "cleansing" to type all of that. It's hard sharing your medical whoas with people who don't understand what you're going through. I got into the routine of saying "I'm ok" to people who'd ask. Sometimes people ask but don't really want to know. I never knew I had such a tolerance for pain, but I had to tell myself that when I have stiffness and discomfort it could be worse. I could not be able to write, drive or walk at all. That kept me going along with learning my limits. I am a single mother of two teenage boys. That has been the hardest part as I have not been able to "plan" activities with them. If I wake up able to get up and go then we do. If not, we wait it out. I have great boys though. They really help to keep me going.
I may have Scleroderma, but Scleroderma doesn't have me!

#17 smac0719

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Posted 07 February 2007 - 02:44 PM

jg, you will be in my thoughts.
I may have Scleroderma, but Scleroderma doesn't have me!