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Everything posted by marjalinajolie

  1. Hello All! I have been lurking around the site for a few days now just trying to learn as much info as I can. I had my second appt today with my rheumatologist and I was given my diagnosis of limited scleroderma. I am not quite sure how I am feeling about all of this. I am in a sense relieved that the problems I have been having have been identified with an actual illness as I was beginning to feel like I was going a little crazy. I now know I was not. My journey began back in April of last year when I went to see my primary care physician for pain in both of my thumbs/wrists. At that point I was diagnosed with DeQuervains Tendonitis in my right thumb (at that point and even still now my right hand is worse then my left). My primary care physician sent me to see an orthopaedic MD who then did cortisone injections in both thumbs. I ended up back to see him as I was still having pain (the actual tendonitis did resolve) so he suggested occupational therapy. He only ordered for the right hand (not sure why since I was having problems on the left as well). The therapist said I had tendonitis in my index finger on the right hand and worked on that awhile. It wasn't progressing like she thought it should so she disconntinued the therapy and sent me back to my primary care physician. At that point they ordered some bloodwork which included ANA, and also tests looking for RA. She was leaning towards RA as one of my complaints was stiffness in my hands in the morning. Well everything came back ok except for the ANA. I got a phone call from a nurse in the primary care physician office telling me that the test came back positive for and autoimmune marker but that was all the more they could tell me and they needed to refer me to the rheumatologist. He was able to squeeze me in a week later and I didn't have enough physical symptoms at that time to diagnose me with limited scleroderma but he did give me an informational booklet and told me that my bloodwork was pointing towards that. He wanted to see me back and also ordered additional bloodwork to check my kidneys, liver, thyroid and repeat ANA. I have access to view lab results when they are released to an online system through my provider so after obtaining the results earlier this week and doing research online I was pretty sure I had scleroderma. My ANA again came back positive as well as my anti-centromere antibody, which I read a fairly high percentage of limited scleroderma patients have. Since my first rheumatologist visit I have begun having Raynauds as well as heartburn so that along with the bloodwork has now officially made me a member of your exclusive club! :emoticons-clap: My doctor also ordered a chest xray, echo, and pulmonary function test as well as a visit to a GI doctor for and Esophagogastroduodenoscopy (EGD) . He didn't actually say he was wanting to get baseline readings for all of these things but I have enough knowledge of healthcare to know this is the case. I did also ask if he has seen any other patients with scleroderma and he says he has seen approx 50 patients with this disease so he maybe isn't an expert but at least has seen some patients to hopefully have better knowlege on the subject. My husband went with me to the appointment today. He has been what I call ignoring me when I talk about something being wrong with me as he always says I could live without him but he could not live without me. He is sort of in denial I think about me having an illness. I also told my 13 year old daughter when she came home from school and told her there was some info she could read to better explain this. I have told one co-worker and asked her not to tell anyone else. I feel safe I guess you could say telling all of you...a bunch of strangers because you all understand what this is like but I am not sure how I feel about telling others in my life. I will have to tell my parents/step-parents. I am okay telling my dad but a little worried about how my mom will take the news and not sure how or when to tell her. Also what about work? Does anyone have any advice on whether or not to tell my boss? This is just all so new to me so I guess it will take a little bit to sink in... ANY advice, suggestions, information, etc would all be greatly appreciated!! To the moderators...I appologize for the oh so long post!
  2. marjalinajolie

    Diagnosed today with Limited Scleroderma

    Judy, Joelf and Miocean, Thank-you all for your welcome and advice. I think those are all great tips and I intend to begin working on a file this weekend. I only have a few things to add at this point but know with my upcoming tests that soon I will probably have a big binder as well! It is a great comfort knowing that there are others out there that have already started to walk down the path I am now going to be traveling and an even bigger comfort to know that I won't have to do it alone. I think the fear that others close to me just won't really understand or get what I am going through is one of my biggest fears but thankfully I will have all of you here that will understand! I did tell my dad and step mom via phone last night about my diagnosis and since they live half way across the country from me they were really wishing they could give me a hug. Funny thing is as I was telling them, I was more worried about their emotional well being as I was sharing the news than my own. I guess since I have really already had a few days to process this information (since I really already kinda knew the answer before I got the official answer). Oddly right at the moment I am not mad or asking why me but rather just saying (as my dad always does) "It is what it is." I am sure I will have days that lead me to be angry, frustrated and sad but right now I guess frankly the diagnosis is what it is and I know I cannot change the actual diagnosis but I am able to control how I feel and my actions. I choose to keep on living and just take the challanges as they come. I will also definately check into the scleroderma experts to see if there are any in my area. I am sure the health insurance could be an additional battle as I currently have an Health Maintenance Organisation (HMO) policy but I guess I will just have to see how that plays out. I think it would be great to be part of a study for scleroderma. That is part of what helps to make great advances in healthcare especially when it comes to rare diseases that the experts don't know all they need and or want to know. Oh I did just think of another question..I did ask the doctor yesterday but wondering the opinion of those here. I am a frequent blood donor and I asked if I would still be able to donate. He said yes since this isn't something that is contagious but wondering what your thoughts are on the subject? Again thank you all for your support, it means the world to me!