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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 she can't drive or work since the vertigo is so bad. Anyone here has this? What can we expect with this condition? I wonder what the connection is with autoimmune diseases.. Thanks for sharing your experiences!
  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 and had my parathyroid checked, I will get results next week. Sun exposure is not the cause since I live in Florida. I'm 29, positive SCL-70, no major symptoms or diagnosis of sclero. I was diagnosed with Hashimoto's two weeks ago which is my only diagnosis so far, besides severe endometriosis which is believed to be autoimmune as well. Thanks!!!!
  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 enlarged thyroid since it's overactive, but is there anyone here that had to have it removed due to Hashimoto's? Thanks for sharing your experiences!
  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 clinical not based on a blood test, some people just have these antibodies for no reason. I do have little aches that come and go, and recently I have developed really sore elbows, which hasn't gone away. It is very scary and I totally understand what you are going through. My advice to you is to find a specialist and to follow up; but don't feel or think like you already have the disease. I did :( and made some very poor decisions out of desperation and anxiety. Here I am 8 months later and no major symptoms, and hopefully I will never develop it. One thing you might want to get checked is your vitamin D. This is the first and only prescription I got at the scleroderma center for my "symptoms". My levels were extremely low. I have been taking (at my doctor's recommendation) 50,000 IU weekly for the past 3 weeks. Hope you feel better, warm hugs to you :) Ana PS: what was the normal scl-70 range from your lab? My highest scl-70 level was 152 with anything over 99 considered positive.
  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't come either!! Good thing is that I can email or call if I have questions :) :) he was so thorough that he even noticed some acne on my back and gave me a prescription. Hubby said that a new definition of a good day is when you go to the scleroderma center and come back with a prescription for your acne... and nothing else!!! I will keep you posted about the test results. I just hope everything is okay for me to try to conceive again and this hair thing is just stress and not sclero creeping in. I typed this from my phone, sorry about typos.
  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 lupus and mom has Sjogren's, Hashimoto's, etc) might have positive ANA and it does not have to mean anything; he also told me that he has seen patients with positive scl-70 for 10 years that have yet to develop any symptoms. I am hoping I am one of those lucky ones. He did say that antibodies seem to show up before symptoms appear according to a lupus study. Another good thing is that my nail fold capillaries are normal, I don’t have any signs of Raynaud's and my skin is soft. Now, the not so good news and the reason why I’m posting. I am going bald!! My hair is falling out like crazy and I probably have a third of my normal volume left. I don’t have any rashes or scars, just the thinning and it’s even. It is really scary and it has been going on for about a month. I had my thyroid checked and although I also have positive antibodies, my TSH levels are normal. Could it be related to stress? I’ve had some major stressful events in the past 3 months: finding out about the positive ANA, 2 surgeries and a complicated pregnancy (I miscarried about a month ago, not due to sclero but to a chromosomal abnormality). The hair loss started while I was still pregnant. As you can see, I’ve been through a lot recently. I just wanted to recover from all this, but now this hair situation is really scaring me. I tested negative for lupus, and it seems like hair loss related to sclero seems to be in patches from what I have read. Anyone has experienced hair thinning with their sclero? Could it be that bad just because of stress? I am not on any medication other than vitamins. Sorry for rambling, thanks for your answers. Ana
  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 feeling sick. I have the advantage to be ahead of the game on this. I have better things to think about though (I'm pregnant with my first!!!) We need to go on with our lives, I wish you the best and please stay positive and let us know about your follow up in 3 weeks. Hugs, Ana
  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 depressed thinking about what will happen (and when) and regretting to be so young to go through this. Basically, unable to function or enjoy life. In the middle of all this, I had to have surgery to treat severe endometriosis. It turns out I was 1-2 weeks pregnant when they did the surgery!! My doctors have told me that most likely this did not affect the baby. They did a pregnancy test that came back negative at the time...go figure. As much as we want to start a family, I am very scared about what is to come for me and for this baby. On the other hand I am very excited about the idea of having a baby, especially after being told my chances of conceiving were slim due to the severe endometriosis. I just hope it's healthy. I wanted to share the news with you all, I will keep you posted. I have a referral to go see a high risk pregnancy doctor, I will call next week to make an appointment. So far I feel great, besides the morning sickness I have a lot of energy and feel fine overall. I'm sure this is an unique case :D but has anyone gone through anything similar? Probably not!!! I am 10 weeks now and the ultrasound looks good. :) Love, Ana
  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 3 months. I have been feeling very fatigued lately but it is really hard to know if it's sclero related. My doctor tells me if I had full on active disease I would know it right away. I know it sounds hard and I am having a hard time with this myself, but you need to put the concerns about sclero in the back seat and continue living your life. Always checking with your doctor of course and being aware of new symptoms but without letting fear rule your day to day (easier said than done). Do you know what was the name of the specific test you tested positive for? I know CREST could have a really slow onset, sometimes decades, while diffuse tends be faster. Good luck and I hope you enjoy good health for many many more years. Ana
  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 the removal of endometriosis could help with my immune function. Some doctors believe endometriosis could be a trigger for autoimmunity in predisposed women, so this makes sense. I am holding on to to the hope that my body will stabilize after the surgery. Love to all, Ana
  14. aka79

    Gleevec

    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, as I find myself looking at my fingers all the time to see if Raynaud's kicks in. I was told some people can have positive ANA and never develop an autoimmune disease. Probably a very very small percentage but it can happen. Razz, I am glad that you are feeling better and that it was actually something that you could fix with a pill or two... :) Ana
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