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aka79

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About aka79

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  1. Hello all, My beautiful sister who is 25 years old has been dealing with lupus since age 18. Although she almos lost kidney function when she was 19, she recovered a few months later after starting Cellcept. She's been doing fine and in remission while on Cellcept for the past 5 years with 100% normal life. About a week ago she started feeling dizzy with bad nausea 24/7. More tests are needed, but Doctors think it is Meniere's (which I understand as a chronic inflammation of the inner ear), just another chronic condition that she will have to deal with... This seems to be pretty disabling as
  2. Hello Everybody, I am really confused. About 4 months ago I was diagnosed with Vitamin D deficiency, my level was 12 and the normal is between 32-100. I was put on 50,000 IU of Vitamin D weekly for 3 months. A month after I started the treatment we retested and my level went up to 26, so my doctor thought I was on good track. I finished the therapy a month ago and just retested, only to find that it came down to 16!! I have an appointment at Johns Hopkins next month and will ask about this, but I am so confused. Anyone had a similar experience? My primary doctor seems confused as well
  3. Hello all, After a year of having positive thyroid antibodies, (but normal TSH) I started showing a small goiter, I went to the Endocrinologist and my TSH level was 13.34 with the normal being up to 4.5. I was put on medication immediately. However, I forgot to ask if the goiter will go away or if it's something I have to live with. It feels inflammed and people can notice it. It bothers me although it's not huge or anything. Any experiences? If it does go away after treatment, how long does it usually take? I understand Grave's (hyperthyroid) sometimes leads to removal of the enla
  4. Hi Elizabeth, I also have a positive scl-70 and no diagnosis. I tested positive about 8 months ago. It is hard to describe how difficult the past months have been, but the truth is that like Amanda said it does not have to be the end of the world and it doesn't necessarily mean you will develop the disease. I recently went to the scleroderma center at Johns Hopkins and while my doctor recognized that we have to keep an eye on things, he told me that as long as I don't present any symptoms; I should go on with my life as I would without the positive result. The scleroderma diagnosis is
  5. Thank you so much for all your responses!!! I saw Dr. Wigley, I did mention the hair loss to him, but I guess it's hard to tell the cause because I was pregnant and my hormones were all over the place. He asked me if I had any rashes or sores on my scalp which I don't. Then honestly I failed to ask him what could the reason be. It's funny how my mind blanked while I was there; I even forgot to bring the questions that I had written down. He sent me for some blood work so I will follow up with him about the results. All these months waiting for this appointment and I blanked!! Hubby couldn
  6. Hello, It’s been a while since I last posted. I do have a lot of updates. I went to Johns Hopkins a couple of weeks ago. It was great; they checked me from head to toe and the doctor gave me a tutorial on autoimmunity. He told me that we have to respect the fact that I have a positive SCL-70 and telangiectasias, but since nothing else is affected I should go on with my life and stop worrying so much, I can even pursue getting pregnant. He wants to see me again in 6 months and do a PFT test. He explained that some people with family histories of autoimmune diseases (my sister has lupu
  7. Hi Amanda, Sending you big hugs and please let us know what the Dr says, it might be nothing serious after all... Let's not get ahead of ourselves... Love Ana
  8. pjgirl, Sorry you are going through this. I know how nerve wrecking the waiting and not knowing what's going on can be. I am 29 and also have a positive SCL-70 and a whole bunch of telegantasias (sp), other than I feel fine. My Dr told me I don't have sclero and just need to keep an eye on things and have a checkup every 6 months. I'm also going to Johns Hopkins in a month and I guess will have a better idea of what to expect after I see a sclero expert. It hasn't been easy, I think about it everyday but slowly have found some peace and at least I'll know what to look for if I ever start
  9. Hello Margaret, I have been following this thread and kept you and Gareth in my thoughts. I am glad he is home, I am sure he is a lot more comfortable. Good wishes for you and keep being strong, you will overcome this new challenge very soon. Love always, Ana
  10. Hi, Okay, this is a long story. I'm 29 and have NOT been diagnosed with anything. I have a low positive scl-70, 3 face telangiectasias and carpal tunnel, that's it. Oh, I also have thyroid antibodies but thyroid function (TSH) is and has always been normal. I do have a family history of lupus, Sjogren's, Hashimoto's, you name it. I have done all kinds of tests and 3 rheumatologists have told me I don't have sclero and won't necessarily develop the disease (I don't buy that but oh well). I DON'T have Raynaud's, skin tightening or any organ involvement (yet?). I have been extremely d
  11. Hi Lisa, You have come to the right place to learn about sclero. If you mean positive ANA by sclero markers, then I think we are in a similar situation. I tested positive for the scl-70 which is a highly specific test for diffuse scleroderma. However, I have not been diagnosed because I don't fulfill the criteria for any kind of scleroderma. I only have acid reflux, muscle pain and other few symptoms that according to my doctor might not be related to sclero at all. I am 29 so aging wouldn't be the cause. She is not concerned though, as my organs looked fine like yours. I see her every
  12. Wow, that is great news!! Thanks for keeping us posted and sharing your experience. I love reading this thread and finding good news everytime!! It makes my day and I'm sure gives a lot of hope to all of us in the forum!!! Warm hugs to you and your husband!!! Ana
  13. Hi everybody. I want to thank everyone for their good wishes regarding my surgery for endometriosis. I had surgery on Thursday, spent the night a the hospital and I'm recovering really fast. The surgery was a success and they were able to remove all of the endometriosis and adhesions I had. I have a question for those of you who have had surgery. My doctor mentioned that I had developed keloids from my previous surgery a couple of months ago. I've never had this before and was wondering if it could be related to sclero. This doctor doesn't know much about sclero but he mentioned that t
  14. Gidget, Thanks for sharing this with us. I am sorry your PTF was not better. I have heard good things about Gleevec. How long are you supposed to stay in the trial? Maybe 6 months is not enough time to see the full effects? Would they increase your dose? Are you allowed to take something else while in the trial? I wonder how Gleevec would interact with other drugs like Cellcept... Please take care, Ana
  15. This is really interesting. Maybe we should start a new topic about ANA tests. I have not been diagnosed because I have a low positive and do not fulfill the symptom criteria. My scl-70 result was 127 with 100-119 being equivocal and 120 and above being positive. I guess the ranges vary according to the lab. They can't diagnose with just the positive test and GI problems; which is pretty much all I have right now among some minor things that could be due to anything according to my doctor. The plan is to be retested again in 3 months and watch out for any other symptoms. It is horrible
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