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Posts 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 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.




    Feeling cold

    Hair loss

    Dry eyes

    Shaky vision

    Difficulty swallowing



    Muscle weakness / random muscle pain

    Carpal tunnel


    Swelling in hands and feet


    Low blood pressure



    Brain fog


    And celiac:


    Gallbladder failure






    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!



  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. 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.....



  6. 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!



  7. 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?



  8. 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.



  9. 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!



  10. 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!



  11. 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!




  12. 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 enzyme last week. I tinkered with a grain-free diet. NONE of those have helped with the chronic burping, even when there isn't food in my belly, that I know of.


    Which leads me to mention my neighbor, who was a chronic burper as well. He assumed it was a hiatal hernia. He had a heart attack last week, got a stint put in, and NO more burping! His blood pressure and EKG were normal after the attack. They told him he burped so much because his body wasn't getting enough blood.


    Hopefully you can understand why I'm once again pushing for a reason for my chronic burping. I am asking myself: what if I have sine scleroderma and I'm getting heart or lung involvement that I haven't been screened for?


    Has anyone here ever found themselves in a similar situation?




  13. 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 the help I've received.


    Jo: I didn't appreciate how the disease has so many different presentations until recently and that it causes so much confusion. I left feeling more confused than ever after my 1st visit with the sclero doctor, but I'm feeling better after thinking about things over the weekend. Thanks.


    Amanda: It was comforting to me to know you're atypical! If I'm truly a scleroderma patient, I'll be atypical as well! We can be atypical together!


    Buttons: After reading your description, I'm definitely atypical with the Raynaud's. Thank you for your input!


    Margaret: I was comforted to know that I present similar to Gareth. I was wondering this weekend if it was all in my head! Also good to know that it's the better of the two! And yes, it hurts, tingles, yet feels numb.


    Judy: I'm very anxious to see in 6 weeks if I still test positive. This weekend I found myself wondering if any of these things were in my head. I re-examined myself and I have no doubt that I have significant symptoms and I'm not crazy! I think why I want a diagnosis is because I want to make sure I'm screened well for other potential problems. Thanks!


    Snowbird: Thanks for sharing that! How interesting!



  14. 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 months later we set up an appointment for me at the scleroderma center for another 3 months later, which was today. As far as 'symptoms' of scleroderma, I thought that I had Raynaud, telangiectasia, and GI trouble starting with gallbladder dysfunction, gastroparesis, gastritis and constipation. The only skin involvement was a little puckering on my left index fingertip.


    I was asked to specifically explain the presentation of my Raynaud attacks. I explained my hands go white, then my fingertips go brilliant red, and longer exposures to cold my nail beds and hands get bluish and same with my feet. I was told this is atypical of Raynaud. The impression I then received of typical Raynaud is more entire fingers rather than the entire hand. Maybe some of you could help describe your presentation?


    Apparently the telangiectasia around my mouth and face and the one lone one on my index finger nail fold seemed atypical to the doctor as well since the nailfold capillary exam showed my nails as mostly normal. The episode of splinter hemorrhages I had must not be a diagnostic factor. So the doctor told me she was not convinced I have scleroderma. We are re-doing the bloodwork to see if the marker shows up for limited scleroderma. A research center is doing it so it will take 6 weeks for the results. In the meantime I'm being referred to a GI who works with alot of sclero patients for further assessment to see if my GI issues could be sclero related.


    I have been gluten free for well over a year, my Hashimoto's is under control since June, so what would cause my atypical presentation of Raynaud and telangiectasia, as well as the gastroparesis, gastritis, gallbladder failure, and constipation? Hmmm.... And I wonder what kind of testing the GI doctor will recommend in order to diagnose scleroderma?


    Any thoughts?



  15. 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 you had ulcers before? Do you have a lot of unavoidable situations that cause it to be active?



  16. 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!



  17. 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.



  18. 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 point the progression slowed?


    Thank you for the work you do!

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