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Everything posted by Chopper

  1. Thank you, Jo, I appreciate the welcome to still hang out here! I sent a letter to my endocrinologist Friday asking if it's feasible to blame so much on Hashimoto's and I look forward to hearing the response. Thank you, Shelley, you have such a nice way of saying things. You're so right. Even if down the road there's a reason to change their minds, I appreciate that I've learned here how things generally progress slowly with limited sclero and have a good prognosis. I thought I'd better clarify why the sclero doctor and GI doctor don't think I have sclero. My barium swallow back in
  2. Hello, All! For the last several months I've had a variety of tests and I seemed to fall into a difficult diagnosis category. Well, the scleroderma doctor feels confident that my bloodwork showed a false positive for scleroderma and that Hashimoto's and Celiac are the causes of most of my symptoms. Hashimoto's: Feeling cold Hair loss Dry eyes Shaky vision Difficulty swallowing Gastroparesis Fatigue Muscle weakness / random muscle pain Carpal tunnel Raynaud's Swelling in hands and feet Constipation Low blood pressure Anxiety Dizziness Brain fog And celiac: Ga
  3. Judy, I do not avoid dairy 100%, but probably 95%. I rarely eat it, but when I do, I choose things like hard cheeses (because they don't have lactose in them), or more seldomly sour cream for a baked potato when I can't resist! It's really becoming a way of life. Cooking and baking are my new hobby. I tell myself I'm eating the foods that most people don't and that I'm really not lacking variety (with the exception of 'fresh' fruits and veggies, thus the need for the full spectrum enzyme). If you decide to go more drastic with how much dairy you cut out, I hope it goes well for you an
  4. I just wanted to give a little update about the burping. My doctor said it might take a couple weeks to notice if the digestive enzyme helps, well, it took about 3 weeks, and I have to say I've noticed significant improvement! After reading the info on black licorice I have chosen to only take one a day, rather than 3 times a day. I wish my GI doctor had known to suggest this. At least in my case it has helped.
  5. Thank you very much, Jo!
  6. I'm feeling discouraged this afternoon. I got sick after eating some popcorn chips, spent 10 minutes in the Herb store bathroom. My beautician tells me today my hair is getting thin and that she really noticed a difference since she saw me last 6 weeks ago. I think I've lost a couple more pounds even though I'm eating well. I'm not sure what to do! I called my regular doctor's office and she'll see me Monday morning. All I can think is this is a malabsorption issue. Maybe I have yet another food allergy? I'm feeling sorry for myself at the moment, I'm sure I'll feel better as the weekend pr
  7. Jalee, I've been told that my presentation of Raynaud's is atypical. My hands and feet go white in their entirety. I am begrudgingly in the difficult diagnosis category. Reading the stories, the forum threads, and the medical section of this website, help me to at least be educated and know what questions to ask, then, like Judy, accept that each day can be great. I wish you well! Chopper
  8. Hi Shelley, Those were my thoughts exactly. Thanks for perfectly expressing them! Chopper
  9. Hello All, I realize anything can happen when testing for connective tissue diseases, but I'm just curious if anyone has heard if it's common or not to have a false positive on the Enzyme-Linked Immunosorbent Assay (ELISA) for centromere pattern? It seems the doctor believes I had a false positive since my first ANA didn't show a centromere pattern. In 2 weeks we'll get the results of another ANA test. I definitely don't have Lupus or RA, so if it was indeed a false positive, I wonder what I have. UCTD? Would there be any chance that Celiac or Hashimoto's would have affected the AN
  10. Hello, Lotwell! Welcome to the forum. It's a great resource and I've enjoyed it for several months now. Sorry to hear you have fibromyalgia. I have a friend who has suffered from it for 3 years now and I understand it can be so difficult. Are you suspicious that you have scleroderma? I haven't been 'labeled' with it yet, however I have symptoms. I'm still going through a diagnostic stage. I hope you are able to find some conclusive answers for your health concerns with your new doctor. Be sure to check out the "Medical" tab on the main page, where there's a wealth of informat
  11. Shelley, Thank you for posting that link to licorice - I was astounded at the possible side effects! I definitely will proceed with caution on that. Chopper
  12. I have an update, yay! I went my internal medicine doctor today because for the last few weeks my chest has felt heavy, and then today it hurt to breathe. I have noticed an increase in reflux in the last couple of weeks. It doesn't burn, probably because I take prilosec, but fluid coming up. I told her I'm a chronic burper. (I then told her about my neighbor's heart attack and how he no longer burps, to which she said is possible.) She assured me that it is reflux that was causing the heavy chest and breathing pain. Just to be sure she did an EKG and said my heart is working beautiful
  13. That was very interesting, especially the article on finding biomarkers.
  14. Hi Mary, Hopefully someone will come along with some thoughts. I haven't had any testing in this area and my knowledge of it is nill. In the meantime in case you haven't found these pages yet, check these out: Here are links to Interstitial Lung Disease and Lung Fibrosis and also Pulmonary Hypertension/Pulmonary Arterial Hypertension.. Take care, Chopper
  15. Marsha, When I read what you wrote in the last part of the last paragraph, I thought to myself, that's where I am too. I look fine. The distress I get from my GI system, at times, brings me down. At times I get so tired of cooking everything from scratch and never being able to 'pig out' or eat what everyone else is eating. In reality, that's not a bad thing since I'm actually eating healthier than they are! But especially lately since I was told more testing needs done to confirm my diagnosis, I have to keep telling myself to take one day at a time and not fret too much. It's hard to
  16. Thank you for the reply, Shelley. I have emailed the same question to my sclero doctor. When I hear back, I was thinking about going to my new internal medicine doctor with the same concern. It just seems so weird to have chronic burping with no known cause. It's just not encouraging to have a doctor shrug his shoulders at you and say we've tried everything. I often wonder what makes me different from the average Joe when I'm already so restricted in diet anyways. Ugh. At times it drives me nuts! Thanks, Chopper
  17. Here's why I ask. I've had chronic burping for about 14 months now. The GI has performed 2 endoscopies, saw no hiatal hernia, just gastritis, gastroparesis and celiac. A barium swallow looked normal. We tried antibiotic for SIBO. We tried increasing the omeprazole. For a few months I took erythromycin for the gastroparesis, but it didn't stop the burping. Further dietary changes helped end the painful attacks so I was able to quit that medicine. I strictly avoid gluten. I'm on a very low fat, low fiber, low residue, diary free diet. I take probiotics, magnesium, and even tried papaya e
  18. Hello, Bleev, Welcome to the forum. I am also in the diagnostic process of this disease. I too feel fear at times. It is truly amazing the resources there are here between all the information under the "Medical" tab, as well as "personal stories", and the forums too. I have learned so much! Look forward to hearing how things go for you! Chopper
  19. Thank you all for replying! Shelley: I thought when my rheumatologist told me I tested positive for limited scleroderma, and she assumed it was in the early stages, that I was fortunate to get a diagnosis. My GI symptoms started in spring of 2009. Thank you for reminding me to take it with a grain of salt. I love to solve problems and I thought I had a diagnosis, but I guess I felt as though I was thrown back into mystery, and it bothered me. Thanks for being there no matter what. If it turns out they won't label me with sclero, I certainly appreciate what I've learned here and all t
  20. Hello, All! First of all, I read a short article at the doctor's office today written by Dr. Thomas Medsger that the "s" in Sjogren's and Raynaud's is being removed! To further complicate how we all pronounce Raynaud! Ray-no! Oh no! Back in April I thought I had Lupus so I went to a Lupus center in Pittsburgh. They did a full exam and blood panel, of course. I recall them saying after my exam, "at least you don't have scleroderma". Well one week later I got the call that I tested positive for limited scleroderma as well as Hashimotos! At my follow up visit at the Lupus center 3
  21. Thank you all for volunteering your time and energy to such a good cause! Chopper
  22. Hi Marsha, As of yet I'm not on any medications for Raynaud's. It was just this past winter that mine developed. The doctor already offered me medicine if I wanted it. I declined because it was summer and I didn't think it would be necessary. I read some things from the link that Jo provided and that was interesting. I've been wondering at what point should I use medicine? I go to my scleroderma doctor Thursday and I think I'm going to ask that. I don't want to take medicine that I don't really need yet, especially if I'm able to keep warm and prevent many episodes. Have yo
  23. Amanda, Thank you so much for your reply! I am a secretary and can appreciate what you said! Thank goodness that those typing motions become second nature! I had noticed in threads that you are very informative and seemed to type well, which is why I wanted to ask you about it. It's very nice you are active here with all that typing, despite the effort it demands! You have such a wonderful outlook! Chopper
  24. Snowbird - I can identify with that. Since we're talking about ridges, after I was first diagnosed with celiac by my GI doctor, I went back to my family doctor for some reason. When the nurse was weighing me in and updating my file, she said, oh you're celiac, I am too, do you have ridges on your nails like I do? I said yes. She said she hasn't seen a celiac who didn't have ridges. Celiac is an autoimmune disease, so I've often wondered if ridges on the nails are typically seen with autoimmune diseases. There must be a logical reason, if this is indeed true. Interesting. Chop
  25. I watched the video Friday evening and enjoyed it. You did a great job! I've read so many things on this site, but it's so nice to not only put a face with a name, but to watch and listen versus read. I hope there are even more videos to come! I don't have sclerodactyly as of yet, so I don't fully comprehend what it must be like. You're so active in the forum and such that I hope you don't mind my asking the following questions, how challenging is it for you to type? Do you have diffuse or limited? How much time elapsed for you from the time you noticed sclerodactyly begin to the poin
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