Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About Chopper

  • Rank
    Silver Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  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 May looked normal. The GI doctor said that 40% of sclero patients have gastroparesis, however, probably all of that 40% also have an abnormal barium swallow. Therefore, that is why Hashimoto's can be blamed for the gastroparesis. Also 9 out of 10 of my nailfolds looked normal and I have no skin involvement which was very important in their observations. My thyroid levels are now within perfect range due to Synthroid. I am seldom fatigued, and no longer notice muscle weakness and random muscle pain. I do wonder about the finger tip pains and splinter hemorrhages and even atypical Raynaud's despite the perfect thyroid level. You made a good point about personally realizing that things weren't in my head. That is such a relief to have that confirmation. Many times I asked myself and tested things to see if they were real. I need to remind myself that I can live with these irritations because they are not debilitating (though sometimes the GI trouble can be), but they are tolerable. And again, that comes from the comfort I received from this forum and the medical information in the resources here. I greatly appreciate that! I'll check in. Wish you all well!
  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: Gallbladder failure IBS Unknown: Telangiectasia Splinter hemorrhages At this point, due to their confidence, I'm not going back to the sclero doctor. Though I still wonder why I have those symptoms even though my thyroid is under control, I guess that sounds like a question for my endocrinologist. So if indeed I do not have scleroderma, I guess I'm one of those weird ones who test positive but don't have it. I greatly appreciate all of the support and comfort you've all given me over the last several months! I wish you all good health and happiness! Chopper
  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 and you quickly adjust. It'll take time. We certainly live in a society that relies heavily on wheat and dairy!
  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 progresses. I'm looking forward to a 2-day assembly I'm attending, so that will distract me. A few weeks ago my thyroid level was perfect, so I know it's not that. Oh bother..... Chopper
  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 ANA and ELISA tests? Chopper
  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 information. Chopper
  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 beautifully. I asked if we need to increase the prilosec, and without hesitation she said NO. She said that I'm also having trouble digesting protein and told me I need a broad spectrum enzyme to help me digest proteins as well as licorice root to help with gastritis. She reminded me, though she didn't need to, to stay away from fats, fiber, gluten, dairy, and be careful with amount of proteins. She said to give it a couple weeks and that she can't guarantee that it will help, especially if it's scleroderma related, sometimes nothing medicinally helps. But I was comforted going to her today so I'm doing a happy dance! :emoticons-line-dance:
  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 do sometimes. I'll rant with you anytime! I see your from Maine. I used to have friends near Kennebunkport back when Bush, Sr. was president. So if you and I were talking face to face, would you call me "Tesser" (instead of Tessa) like my friends did? Is a horse - hoss? Do you drive a ca instead of a car? LOL! Are you Mosha? Sorry, I couldn't resist! Have an awesome evening! Chopper
  • Create New...