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Questions Re- Symptoms & Diagnosis


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#1 Bunky

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Posted 22 April 2007 - 08:13 AM

Hello,
This is my first post and I have so many questions. I am in the process of being evaluated for systemic sclero, have a confirmed diagnosis of sclero via skin biopsy, but will see the rheumatologists at Stanford Hosp. in Northern California next month to determine whether localized or systemic. My ANA tests have all been negative, but was diagnosis withfibromyalgia 5 years ago, muscle/joint pain, have had shortness of breath for 5 years (flares, not constant) that is treated with asthma meds, interstitial cystitis diagnosis 10 years ago, episcleritis, gastro reflux, numbness in fingers and toes, the list goes on...etc.
In august '06 I found a red flat lesion on right breast, and after many biopsies including romoval of quite a bit of breast tissue (orig. thought to be inflammatory breast cancer), I now have 33 lesions on both breasts and trunk, I have seen 8 doctors for the lesions, and finally went to Stanford where they found the lesions to be scleroderma.
I am wondering if other people have these symptoms:
Trouble getting warm again if body gets chilled?
Shortness of breath that causes slight hyperventilation and sometimes can't walk across the room without shortness of breath, and then other days can exercise and do anything?
Unexplained kidney pain?
I think that's enough questions for one post. Any insight anyone has would be very appreciated. Thank you so much! :)

#2 nan

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Posted 22 April 2007 - 09:26 AM

Bunky,
Welcome to the forum! You will find great support here! I can't really give you any answers. I think that it is good that you are seeing the doctor next month. I have CREST/limited scleroderma, Sjogren's, and Fibromyalgia.
Take Care!
Nan

#3 Heidi

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Posted 22 April 2007 - 09:45 AM

Hi Bunky,

Welcome to the forums! I am glad you found us but sorry it is because of all your symptoms and suspicion of systemic scleroderma. It is not typical for someone with localized scleroderma to also have systemic.....BUT, everything seems possible (although it might not be probable) with this disease. I have also heard that some people with localized do have some symptoms consistent with systemic. It is good that you will being a specialist to sort out all of your symptoms. Even if you do not get a firm diagnosis, hopefully the rheumatologist can prescribe some medication that will help relieve some of your symptoms.

Please do keep us posted and let us know what you learn. Again, welcome!

Warm wishes,
Heidi

#4 janey

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Posted 22 April 2007 - 12:16 PM

Bunky,
Welcome to the forum! I'm so sorry you are here due to your diagnosis and various symptoms. It does sound like you are working with some very good doctors who are set on finding out what is going on. I hope you get some answers and effective treatment very soon.

In answer to your questions:
Trouble getting warm again if body gets chilled? Definitely! Besides the fact that I'm cold pretty much all of the time, it's very hard getting warm. I'm in a long sleeve shirt and a sweatshirt right now and my hubby is in a T-shirt and shorts.
Shortness of breath that causes slight hyperventilation and sometimes can't walk across the room without shortness of breath, and then other days can exercise and do anything? I get short of breath (SOB) with about any type of exertion. However, I have been diagnosed with pulmonary involvement, so that explains my symptoms. These are symptoms you should definitely bring up to your specialist and probably get a referral for a pulmonary doctor. Of course, SOB can be caused by many things so please mention it to the rheumatologist.
Unexplained kidney pain? Don't have this one.

Again, Welcome. Please let us know how your visit goes next month, but do not hesitate to ask more questions if you have them.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Sweet

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Posted 22 April 2007 - 02:11 PM

Hi Bunky,

Welcome to the Sclero Forums, I'm so glad you found us. I'm sure sorry that you are dealing with these awful symptoms. Sometimes it can take a very long time to pinpoint which autoimmune disorder a person has. So hang in there and just make sure you bring up every symptom you have to your doctor.

I have experienced quite a few of the symptoms you have mentioned. Some come and go, and come in spurts. You will find that you may flare and then at other times feel a bit better.

So glad to have you here.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Bunky

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Posted 22 April 2007 - 06:35 PM

Thanks to all of you for responding to my many questions. This forum is really a wonderful resource.