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Everything posted by mopsygirl

  1. Hi Janey, Was it difficult to get them to approve it? How long did it take to get it approved from the time your doctor ordered it until the time you began treatment?
  2. Does anyone have experience with getting these for insurance purposes? Did they cover the IVIG treatments? Thanks in advance!
  3. Sending good vibes for an easy procedure and a swift recovery!
  4. Hi Shelley, thanks for the FDA link! It doesn't say anything about whether it not it is back in production... I was going to try and call the manufacturer to find out, but they are located in Europe and I'm in the US (and overseas phone calls are expensive!)
  5. I was told by my new Rheumatologist that the injectable form of Methotrexate was recalled a few months ago, and that as far as he knows it is still unavailable. Can anybody confirm this or refute this? I'm a little perplexed as to why they wouldn't start production again months after the fact!
  6. Thanks for all of the support :) Is there a reason why some people have bloodwork that comes back positive and some people's bloodwork comes back negative?
  7. And was ANA positive. I guess this just solidifies what we already knew based on my symptoms. I am feeling optimistic about beginning the MTX, and hoping that we can get it into remission soon.
  8. Hi Sacha! I'm really sorry to hear that you and your daughter are going through so much right now :( I am 21, and have had Localized Scleroderma since I was around 12 or 13. Although I have the localized kind, I had severe gastrointestinal problems for years after the Sclero started. I ended up having a Nissen Fundoplication to stop the acid from eroding my esophagus. Anyways, I'm not a mother, but I do know what it's like to BE a child with Scleroderma and might be able to help! I hope to talk to you soon :)
  9. Hi Tawanda! Like some of the previous posters, I too have had a Nissen Fundoplication done. Mine was done 8 years ago and was a great success. I have been off all GERD meds since the surgery! On another note- I also know what it's like to deal with extreme fatigue. I am 21 years old, and a lot of the time my energy level is so low that it takes everything I have in me just to shower and get ready to leave the house. Please remember that you aren't alone in this terrible disease, and that the members of this board will always be there if you need anything... including hugs! :hugs K
  10. Hi Buttons :) I'm really glad the surgery went well! I wish you a speedy and easy recovery! Kelsie
  11. Hi all. I just got back from my first appointment with the Rheumatologist. As I expected, she really didn't know much about En Coup De Sabre... but was familiar enough to make a preliminary diagnosis based on the line down my forehead and the bald patch of hair at the top of my scalp. My mom went with me, and I'm so glad she did because I probably would not have been strong enough to handle it own my own. The next step is to find a Rheumatologist that specializes in this disease... Any physicians to recommend? I don't care about the distance, as long as it is in the United States. Tha
  12. I am feeling a little better today. I actually just found a therapist, and my first appointment is tonight! It's been a really stressful week, as I had finals. I am really proud of myself for pushing through and getting my work done, even though I have just wanted to curl up in a ball and cry. I hope you are all feeling well :) Mando, if you would ever like to chat, please feel free to shoot me a message. As much of an emotional wreck as I have been lately, it would be nice to help out someone else that was in my same position. Thanks again for all of the encouragement everyone!
  13. I am really down tonight... any words of wisdom? The magnitude of the situation is really starting to hit me and I'm panicking :(
  14. Wow! Thank you everyone for your warm welcomes! I definitely feel like this is a place I will be able to turn to for support when I'm down, and a place where I'll be able to share good news as it comes. I'm a bit depressed at this point, and I'm having a tough time waiting out the days until my appointments. I guess the anticipation about what comes next is what I'm dealing with...
  15. Jeannie, Thanks for the great advice. I will try and get in contact with Emmi :) My mom is extremely supportive and will definitely go with me to my appointments. It's been really difficult for her to have to see me going through all of these medical problems, and I feel really bad for dragging her through all of it.
  16. Sheryl, Thank you for the warm welcome. I have to go through the referral from my general practitioner to the specialists before I can even attepmt to look for a Rheumatologist specializing in Scleroderma, and that is super frustrating. However, for once in my life I feel like there are other people out there who can understand what I am going through, and understand that there is a true link for all of my ailments. Do you happen to know what kind of treatments are available for En Coup De Sabre, if there even are any? There is not much information about it on the internet, and I'm wonderi
  17. Hi, I'm Kelsie. I'm 21, and my whole ordeal began when I was in 7th grade. Since the time of onset, I have had three seemingly unrelated symptoms- terrible gastrointestinal problems, chronic fatigue, and the "scar" on my forehead. I have had 2 surgeries to correct the stomach problems, and numerous visits to the neurologist to try and explain the fatigue (unsuccessfully). The line on my forehead has not only darkened over the years, but it has become indented too. I also have a small patch the size of a dime at the top of my hairline that has begun to bald. My doctors have never been
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