Anyone diagnosed with “atypical connective tissue disorder"?”

Posted by basslakebabe19 @basslakebabe19, Oct 20 2:57pm

Has anyone been diagnosed with “atypical connective tissue disorder?”

Hi @basslakebabe19,
I also added this discussion to the Breast Cancer group. From your earlier messages on Connect, I understand that you were diagnosed with Connective Tissue Disease associated with having silicone breast implants after breast cancer surgery. Correct?
I found more information in this article
– Silicone gel breast implants and connective tissue https://healthcare-in-europe.com/en/news/silicone-gel-breast-implants-connective-tissue.html

If I understood the article correctly, the association of silicone breast implants with connective tissue diseases (CTDs) has led to the hypothesized new "atypical" disease, which does not meet established diagnostic criteria for any known CTD.

How were you diagnosed with atypical CTD? What are your symptoms? Are they similar to mixed connective tissue disease? Are you on any treatment to manage the symptoms or complications?

REPLY
@colleenyoung

Hi @basslakebabe19,
I also added this discussion to the Breast Cancer group. From your earlier messages on Connect, I understand that you were diagnosed with Connective Tissue Disease associated with having silicone breast implants after breast cancer surgery. Correct?
I found more information in this article
– Silicone gel breast implants and connective tissue https://healthcare-in-europe.com/en/news/silicone-gel-breast-implants-connective-tissue.html

If I understood the article correctly, the association of silicone breast implants with connective tissue diseases (CTDs) has led to the hypothesized new "atypical" disease, which does not meet established diagnostic criteria for any known CTD.

How were you diagnosed with atypical CTD? What are your symptoms? Are they similar to mixed connective tissue disease? Are you on any treatment to manage the symptoms or complications?

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The diagnosis came in the late ‘90’ s when I was filing for the Dow Corning settlement. While it took over ten years to settle, I fit “their” criteria for atypical connective tissue disorder. Believe me, it was quite an extensive process. I had to meet so many medically substantiated diagnoses that I was kept quite busy. Many symptoms, but that was decades ago. Mainly the silicone spill affected my tendons, especially in my shoulders. I lost both rotator cuff muscles, leaving nothing left to hook them up to. The tendons just dissolved. That lead to reverse shoulder replacement surgeries decades later. (Thank you, Dr. Sperling) I also lost the tendons in my right arch. The surgeon removed toe tendons to make new ones for the foot. There were numerous other conditions which are too lengthy to explain. My diagnosis came from the main expert in silicone disease in the ‘90’s ( who performed the explanation in the ‘90’s) and knew exactly what blood tests and MRI’ S to have. I had all the supporting info for the Dow Corning Settlement . Believe me, that was tough; they created an entire booklet with requirements to meet and document. I was my own attorney as no one wanted the case back then. It’s been a long journey. The silicone cannot be completely eradicated. I just try to lead as healthy a life as I can and address issues as they pop up….such as a recent biopsy which revealed a pre- cancerous lesion.
I just read the article from the link you posted, and yes, I was also diagnosed with Sjogren syndrome, fibromyalgia, and many others which I can no longer even remember. I just burned all the records yesterday as I have put this dark period behind me. I am a survivor; that is all I need to know.

Liked by elizm

REPLY
@basslakebabe19

The diagnosis came in the late ‘90’ s when I was filing for the Dow Corning settlement. While it took over ten years to settle, I fit “their” criteria for atypical connective tissue disorder. Believe me, it was quite an extensive process. I had to meet so many medically substantiated diagnoses that I was kept quite busy. Many symptoms, but that was decades ago. Mainly the silicone spill affected my tendons, especially in my shoulders. I lost both rotator cuff muscles, leaving nothing left to hook them up to. The tendons just dissolved. That lead to reverse shoulder replacement surgeries decades later. (Thank you, Dr. Sperling) I also lost the tendons in my right arch. The surgeon removed toe tendons to make new ones for the foot. There were numerous other conditions which are too lengthy to explain. My diagnosis came from the main expert in silicone disease in the ‘90’s ( who performed the explanation in the ‘90’s) and knew exactly what blood tests and MRI’ S to have. I had all the supporting info for the Dow Corning Settlement . Believe me, that was tough; they created an entire booklet with requirements to meet and document. I was my own attorney as no one wanted the case back then. It’s been a long journey. The silicone cannot be completely eradicated. I just try to lead as healthy a life as I can and address issues as they pop up….such as a recent biopsy which revealed a pre- cancerous lesion.
I just read the article from the link you posted, and yes, I was also diagnosed with Sjogren syndrome, fibromyalgia, and many others which I can no longer even remember. I just burned all the records yesterday as I have put this dark period behind me. I am a survivor; that is all I need to know.

Jump to this post

That is quite the journey, @basslakebabe19. I'm sure you learned many skills and loads of information that you wish you never had to learn. Congrats on the burning and purging, and forward with surviving and thriving.

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The really unusual thing happened when I wrote to the FDA in the ‘90’s about any organizations that existed as support groups. They were not able to help me, but they put my name on their web site as a “ support group leader.” I was shocked….I started getting calls from all around the area. I usually met with the women for lunch, asked the right questions based on my experience, and tried to help In Any way possible. It was an interesting time. I will never forget one example; a friend’s daughter had breast cancer and wanted to be implanted right away in the same surgery. The Dr that I saw, the Expert in Silicone disease, said NEVER implant until the healing from the cancer is COMPLETED as the body cannot deal with the foreign body when trying to heal. The daughter told her mom, my friend, that she believed in her doctor, and that she was in a “study.” She felt perfectly safe. I told her mom that all a study did was keep track of who lived and who died back then. She proceeded with the implant and died within a few months. That didn’t have to happen. Thus I became an activist.

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