Newbie looking for input
Posted 29 September 2007 - 07:36 AM
3 years ago I was diagnosed with psuedotumor cerebri.
2 years ago I had my first superficial blood clot in my leg. Over the next 2 years I had 3 more clots that were always superficial.
1 year ago I lost my voice for a period of 3 weeks. I was diagnosed with laryngeal reflux.
Over the past 2 years I have seen my GYN countless times insisting there has to be something wrong because I have so much pain during intercourse. I had 2 fibroids removed and told to use KY for the dryness. I was told my hormone level must have changed.
Spring of this year is when symptoms seemed to pick up speed. A new clot started as superficial but then turned into a dvt. That is when I was referred to a hemotologist. They wanted to find the cause of the blood clots. I was tested for everything and the only thing that kept back alarmingly wrong was my anemia level. I was at a 9 (not exceptional), but within 3 weeks of retesting me I could hardly function at a 7. I began I iron infusions with a little reprieve. Well after and upper and low endoscopy they found I had watermelon stomach. I have had 2 sessions to treat the watermelon stomach. Crossing my fingers that it is enough.
After much searching for info on watermelon stomach I found info talking about Raynauds. Oops I forgot to mention to all of the doctors I was diagnosed with Raynauds at the age of 20. Now 37. I found it trivial to mention because at the time of diagnosis the specialist told me the solution was to keep them warm. You mean at 20 years old and living on a shoe string I paid all of that money for testing to be told to wear gloves and keep them warm. I put that diagnosis on a back burner and never told future doctors down the road about it because I actually didn't even think about it. I thought it was insignificant.
Well I told the hemotologist all of this info. He immediately referred me to a rheumatologist. After testing 2 weeks ago. I was ANA positive with a centromere pattern with a titer of 1:1280. The doctor still does not want to diagnosis, but just watch it. I am supposed to call if anything changes otherwise I will see him in 4 months.
My lower legs hurt all the time from swelling and cold. My forarms are weak and what I thought was throat irritation from a cold 3 weeks ago hasn't gone away. I think they attribute all of the aches and pains to my morbid obesity, which maybe is the cause but I am not making up the blood tests, blood clots, raynauds and watermelon stomach
I don't know if I have scleroderma but I feel like the signs and symptoms are heading that way. Can you have an ANA ACA positive with 1:1280 and the other symptoms and maybe have something else?
Posted 29 September 2007 - 09:09 AM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 29 September 2007 - 09:24 AM
Welcome to the forum. I am really glad that you made it to the rheumatologist and that things are starting to make a little more sense. I like you are new to this site and still have not been diagnosed as having Sclero yet, but I'm pretty sure I do. You will find that the people here are so warm, understanding an incredibly helpful. It's so hard when non of your family and friends can relate to what's going on.
Again, I welcome you with a big warm hug!
Posted 29 September 2007 - 10:18 AM
Welcome, I am so glad that you joined us. I am sorry tho hear that you are going through so much and have had to deal with it for so long on your own It sounds like you are on the right track with the rheumatologist. Many of your symptoms sound suspiciously familiar, however I really hope that the doctor doesn't diagnose you with Scleroderma. Either way, we are here for you.
A good link to help you understand some of the blood work that you might go through is this one from the ISN.