Hello Everyone,im New Here
Posted 30 October 2006 - 01:22 PM
Posted 30 October 2006 - 01:45 PM
Welcome to the Sclero Forums! I am so glad you found us, but sorry it is because of your diagnosis of diffuse scleroderma. I am sorry to hear about your recent blood clot, but glad that you are now out of the hospital.
I looked around our Sclero A to Z website for references to scleroderma and blood clots. There are some people who also talk about having blood clots in their personal stories. Here is the link to personal stories: http://www.sclero.or...ies/a-to-z.html
Once there you can search by symptom, so just search by "blood clot".
There is also another autoimmune disease, antiphospholipid syndrome, which I believe can cause blood clots (I am not a doctor, so do not quote me on that). Here is our link to it:
You may want to read through that and see if there are similarities with what you are experiencing.
I hope this information is helpful. And, again welcome!
Posted 30 October 2006 - 02:28 PM
I have not had problems with clots, but I wanted to say Welcome to the group. Even though I can't help you on this particular subject, I know someone will give you very good advice.
Look forward to hearing more from you,
Posted 30 October 2006 - 02:49 PM
Welcome I too am new on this board as well. Sorry to hear of your stay in the hospital glad that your out. I have had morphea scleroderma. mainly in my legs. no sign of clots though. I am hoping for the best. And you find a resolution to this issue. My thoughts. Mojoy
Posted 30 October 2006 - 03:09 PM
I am so sorry to hear about the problems you are having but the group of people here are all very warm and supportive--so it is good to be here in that sense.
I am familiar with something called antiphospholipid syndrome. I myself have tested positive for anticardiolipin antibodies which are a type of phospholipid.
Miscarriages, neurological problems, blood clots...all can be associated with APS. It can occur on its own or be secondary to autoimmune diseases like Lupus. If you haven't been tested, you should be.
Read up on it and then take your knowledge to your doctor. APS is also known as Hughes syndrome named after the doctor who recognized and defined the syndrome.
Posted 31 October 2006 - 08:13 AM
Hope you're feeling better today. I now battle with having blood clots. It first started three months after I was diagnosed with Sclero. I was admitted in the hospital for migraines and while I was in the emergency room the nurses weren't able to start an IV in my arm. They stuck me ten times until my doctor came back and had to do it himself. He was furious with them. I was released the next day with a small bruise on my left arm. I didn't realize what it was until a week later. I was back in the hospital a week later on a Friday due to a blood that formed on my left arm. My doctor told me that if I didn't agree to be admitted to receive aggressive treatment then they would have to amputate my arm because gangrene had already set in. I agreed to admittance and wasn't released until a week and a half later. While I was in the hospital I started to have muscle spasms in my chest where I couldn't breathe. I was scared because I felt alone in there with no where to go. There were so many lines in my arm and I was hooked to a heart monitor. They wouldn't let me walk around because it was cold in the hallway. My doctor had specific instructions for anyone that entered my room; the temperature was to stay at 80 degrees. Fortunately, I had wonderful nurses, technicians and an exceptional doctor.
Because of the progression of Raynaud's, I wasn't getting enough oxygen. They thought the treatment was working. I was on Unfractionated Heparin (anticoagulants) that can prevent new clots from forming and prevent existing clots from getting larger; however, they do not break up or dissolve existing blood clots and Levaquin. I was on other medications for angina, swelling, acid reflux and migraines. The main artery in my arm suffered from long-term compression which can lead to damage to the artery resulting in blood clots causing hand ischemia (lack of oxygen) that, in turn, may have lead to limb loss. By that next Monday, three more clots had formed so; I had to be rushed into surgery for a venous thrombectomy. It is said that rarely, physicians recommend surgery to remove a deep vein clot. While I was in surgery, they had to fit me with Elastic compression stockings which are used to reduce swelling and prevent blood from pooling in the veins in my legs. Other complications occurred but I will not comment on it here. Donâ€™t want to depress anyone any further. I have a long scar along the front side of my arm from wrist to elbow and a small scar on the back of my arm from mid-way to elbow.
After the surgery, my doctor told me that I have Deep Vein Thrombosis (DVT) which requires me to take a blood thinner for the rest of my life because Iâ€™m susceptible of recurring blood clots throughout my body. I was in shock for a long time because my quality of life has changed once again. I have to be extremely careful now more than ever. This body cannot afford to sustain the smallest cut or bruise.
Memeto2, I do hope you get better and find the answers that you seek. Do not take this condition, if it is what you have, lightly. Ask your doctor about it and do it quick. If you ever want to email me, please feel free to do so.
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International Scleroderma Network
Posted 31 October 2006 - 11:28 AM
I've not had experience with blood clots, but I'm glad that Hailee and Michelle were able to address the problem. However, I'm sorry the three of you have first-hand experience and hope all of you do well.
Posted 31 October 2006 - 06:28 PM
Welcome to the board. I'm sorry that you are here due to your diagnosis of dSSc, but as you have already discovered, it's a great place for information and support. I hope you read the information that Heidi provided on APS. The whole blood clot thing is a primary symptom of that autoimmune disease. I have dSSc but do not experience blood clots.
I hope you get some answers soon. Please keep us informed on how you are doing and how your doctor appointments go.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 01 November 2006 - 05:07 PM
I to have Diffuse Scleroderma I was told this in August of this year. I was wondering if you could take me through the steps what you have gone through in your first year of diffuse sclero. I am sorry to hear about your hospital stay, I hope they got the clotting problem under control. How did you know you had them? Is this something I need to worry about getting with this illness? I am just recently new to the board also and would like to hear from you agian on whats going on with your health.