kris52770

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Posts posted by kris52770


  1. Hi Everyone,

    Hope everyone is doing well. Sorry I disappeared for a week or so but I am back as I promised I would let everyone that has been so helpful in on what has been going on. It makes me laugh....all the months of doctor's basically blowing me off..well now all of a sudden everyone is calling.. Guess it takes this in order to make people listen.. On a positive note I have had things happen very quickly at this point. In one week I met with the Rhuemotoligist who started running tests right away.Thanks to the excellent advice here from you guys I knew what questions to ask when, so thank you. Kidney and lungs testing has been done waiting on the heart next. All kinds of bloodwork done. Most importantly the first thing the Doctor told me was once the bloodtests come back I am sending you to Boston to the Sclero specialists..She said I will gladly stay your local but you need to go to them because they are the best. I knew this Rhuemo was a keeper. Basically she informed me that by next Thursday or Friday she would have the results and would call me. At this point I really do not know which type it is but at least they are listening which you all know is half the battle. This last week has been crazy between working full time and hospital appointments and trying to keep up with my 9yr old's schedule. Emotionally with only 2 weeks under my belt with this is a still a struggle on and off. However after hearing from some of you it has helped so much. I only hope I can pass the same along to someone else. Hugs to everyone :emoticons-group-hug: Christine


  2. Hi Lesley,

     

    Welcome!!!! I am new as well. I just got mine diagnosed about two weeks ago and everyone has been so great to talk too. I too spent months seeking answers and doctors basically ignoring me or making me think I was crazy. Luckily or maybe not so luckily a dermatologist figured mine out because of the early skin signs. I definitely noticed skin changes and then they seemed to be less noticeable. My first patch was on the shin and then I noticed loss of pigmenation on my face in a couple of spots. The dermatologist actually found some on my back as well. Seemed like as soon as that started happening the rest came quickly. Red swollen hands, Raynauds on my legs...hands and feet very shiny as well...

     

    I have gotten great advice from the very caring people on this forum. Who better to ask than the actual people who have it. I have located a sclero specialist and will be using them as well as my regular doctor. The skin changes are real....trust me you are not losing your mind. Hope you are able to get in with a sclero doctor and please join us often. This site has seriously helped with my mental state. Good luck and we are here if you need us.

     

    All the best,

     

    Christine


  3. Thank you Jeannie for the insight. It is greatly appreciated. I will definetly let you know what happens on Thurday. I think you are right and it is time to push a little harder with these doctors. Thank you again


  4. Hi Everyone,

    I hope everyone is doing well. I have had a really tough couple of days. I am so confused and don't really

    know where to start. I am definitely not a wait and see person.. :crying: For months I have had such pain off an on on my left side. No one seems to be concerned but me about this. I feel like there is something stuck in my back but I don't know if it is the muscles or the skin or even worse the heart. It is in the same area where they did the skin biopsy but it is not from that. This started way before that. It is also what started me on my quest of the endless doctor/hospital visits. How long do they wait before they test the organs to make sure that they have not been affected. :temper-tantrum: My skin symptoms started after all the muscle and body aches which have gotten better with the exception of my feet. This nagging ache is really freaking me out. I do have an appointment with my Rheumatologist on Thursday and feel I need to touch base with the primary. I also located a specialist 45 minutes away thanks to this website. I am sorry if it seems like I am whining just no one understands the fear like you guys do. Any insight from you would be great..you are the experts... Thanks so much for listening...All the best

     

    Christine


  5. Hi Queenie,

    Sorry to hear you are not feeling well. Strangely my symptoms started with infection after infection. Six months straight with testing so high for one virus after another..it was only after the dust settled that I realized that there was something else going on. My rheumatologist was on to something...but the virus brought on the worst muscle and joint pain I have ever experienced. I felt some days that I would drag myself home after work. I do believe that the infections tend to aggravate an already bad situation. I wish you all the best and hope you have a speedy recovery.. :emoticons-group-hug: Christine


  6. Thank you all so much for the comforting thoughts. I am amazed at the strength you all have. Being the newbie I hope I don't annoy you with my questions. I am meeting with doctor next week. I imagine that they will run some tests to see which type it is. I do have some questions. Has anyone had any head fogginess. This has been driving me crazy all day. My hands are very swollen today and they looked streched out. They are red and the color ranges all day is this normal? I also feel like there is pulsating in my stomach. If anyone has experienced these and could let me know. Thanks for your patience.


  7. Hi Amanda,

    I am still waiting to find out what kind, at this point they are waiting for the second set of bloodwork. They found it through a skin biopsy and ANA results. I appreciate the kind words. Looking forward to meeting lots of people that can understand the crazy unexplained symptoms.


  8. Hi Everyone, I received my news last Friday. In one way I was glad to finally have something to call what I commonly called Chester (the monster who was living inside) on the other hand this sent me for a loop. Started this journey in October with incredible amounts of joint pain, all kinds of crazy symptoms followed. After months of being treated like I was out of my mind finally a dermatologist figured it out.

     

    I can tell you that I have been on this site everyday since I found out. I had never even heard of this. After a very bad weekend of trying to figure out what to do I decided that I will get all the knowledge I can and live life the best I can. I have a 9 year old to think of. Just wanted to say Hi and introduce myself. I have been inspired by some of the things I have read on here. I now have hope again. Thank you all for that.

     

    Bless you,

     

    Christine