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Posts posted by Chopper

  1. Hi Marsha,


    I get that feeling too, like I don't want to be a pain and I fear calling, I think most of us can attest to that. Sometimes I make myself wait a little bit and think about it and ask myself how patient should I be with that concern. Sometimes I can wait, sometimes I can't. I have 3 autoimmune diseases that I know of. All were surprising except the thyroid because everyone in my immediately family has the same problem there, but no one else currently has the others. I often wonder which one came first and did it start the chain reaction. Let us know how your new referral goes - sounds like a good direction!



  2. Hi Lisa,


    You sure have a plate full! And it seems you have the personality to take charge and run with it! Sounds like your daughter has that spark too! Glad to hear things went well. I have to confess, when it comes to things like your bursa sac, I tend to be more fascinated than faint-hearted and grossed out! But I'm the type to pick up a bug for a closer look rather than run screaming. However, I hope it gets under control very soon! And your poor knee too!



  3. Hello All,


    Been a little while since I posted so I thought I would share the latest test I was given since it doesn't seem like a common test. I was given a sialogram because I was told that the positive antibodies I have for limited scleroderma can sometimes be seen in patients with Sjogren's (even though I don't have positive antibodies for Sjogren's). I 'think' to help fine tune things, this was a test they wanted me to have. When I went to have it, I asked the nurse if they perform many, she said maybe 10 a year is all. I told her I didn't fully understand why I was asked to have it done. She asked if I had Raynaud's because some people with that get this test - which I thought was interesting.


    How it works: While lying on a table under an xray machine, they put a blunt small metal pin in your salivary gland for a minute to start dilating the opening, followed by a larger one, then I think one more. They then insert a small tube into your gland. None of this hurts. They get the xray machine in place around your head and simultaneously xray while injecting contrast into your gland, uncomfortable, but not painful. You move your head in every direction to get pictures from all angles. Then they send you to get a CT scan. Afterwards they xray you to make sure the contrast is all out. Only one side can be done at a time.


    I went back the following week for the other side, but decided not to have it done because the doctor performing it told me he felt there was nothing acute and saw only mild disease. It seemed like an expensive test so I thought I would try to spare my insurance company the additional expense for now, unless my rheumatologist decides after seeing me in a couple weeks that she wants me to have the other side done. So that's good news.


    However, I would like to whine here about my stomach. It was last August that the GI doctor saw evidence in my endoscopy of gastroparesis. Since then my gastroparesis continues to worsen. Last week I had a miserable sinus infection and thought maybe that's why I was having more trouble eating. Interestingly though, that's not the case. I take Eryped200 3 times a day 1/2 hour before each main meal to help my stomach contract. The pharmacy that I had been getting the med from gave me a full month's supply and told me it's good for that long. Last week I was finishing the 4th week when I was having increased trouble eating. In order to save money, I just ordered this med from the mail (buy 2 months get 1 free). When the mail order pharmacist called me to tell me how to mix it when it comes, and he said to only do one bottle at a time and discard it after 14 days. He said it loses it potency after 14 days. I called my GI doctor's office and they researched that and confirmed that. No wonder I've had a hard time eating lately! So I ran out of medicine a couple days ago and I'm hoping the mail order will arrive today or tomorrow, but I am miserable, and even kinda scared. I feel as though I can't eat without being sick. I had 2 gluten free pumpkin muffins during the morning and I was so nauseous and my stomach hurt - I fought throwing up. I'm sipping on broth right now and wondering how bad is this going to get in the future? In less than a year I've seen this worsen and it gets me worried, especially when it's causing me alot of discomfort. I don't know anyone else with gastroparesis and I want to whine to someone else who knows what I'm going through!



  4. Oh....my.....goodness! I can't imagine your frustration! That story is unbelievable. I sure hope there is some good come out of this - like reimbursement and special treatment and free visits! Thanks for the caution and I'm sorry you went through that! I hope you were at least able to do some sight-seeing or have a nice lunch or dinner while you were there. That's what I try to do for my appointments out of town. Let us know how this turns out for you!

  5. Hi Erika,


    I have positive antibodies for limited sclero, but I haven't received an official diagnosis yet either. A couple months ago I was having a slew of strange things happening to me, and after looking back I believe stress aggravated things. I work at an accounting firm and tax season can get so stressful. One of the things that bothered me, which I went to my eye doctor for, was dry eyes and when I would go to read my vision would be shaky. The eye doctor could tell I had dry eyes, but he seemed to think that stress or eye strain was causing the other trouble. I haven't had much trouble with it since that week. Do you have much eye strain now or are you stressed? Maybe even go to the eye doctor before you see your rheumatologist. Hope it gets better!



  6. Thank you for the replies! I'm glad to read it's not a definite marker. When I met my rheumatologist in March, I had 2 red spots on my forearm, but I had no clue about them, so I didn't even mention them. Then when she called me a week later with the blood test results, I noticed one on my lip. When I started reading things here, I realized they must be telangiectasia. Since then I think I've got a new one or two every day! I will take the advice not to panic!


    You know what else I wonder, people with telangiectasia can have watermelon stomach in the antral part. I wonder if the antral gastritis I have is the beginning of watermelon stomach developing, or if it's related to the gastroparesis or celiac. I may never know, but at least I know that its possible to develop it.



  7. Jeannie, I'm all to familiar with Punxy Phil - he's not that far away from us! Unfortunately we've never gone for the festivities. It's always during tax season and we're not allowed vacation then. So I watch him on the news like most people! And your analogy fits perfect!

  8. Are you tired of my questions yet?! "Inquiring minds want to know!" :VeryHappy: Last night as I was sitting in a meeting, I was looking at my freckled arms, and amongst the freckles I saw that more telangiectasias had popped up. It made me glad I have freckles to camoflage the red spots! So at bedtime I started reading more (here) on them and got somewhat freaked out that they can be connected to the presence of pulmonary hypertension. Mine are quite scattered - outside lips, nose and cheeks, chest, stomach, arms & hands. I don't see the specialist until the end of June, but I'm going to go to a new family doctor (internist) in a couple weeks. So is this something I should ask about or do I wait for symptoms to ask about it? Should I ask the family doctor or wait to ask the specialist? What does having that feel like?



  9. Hi Susie,


    Yes, this was my first one. I too was thinking it would be a good baseline. The next test I'm having will be a sialogram to evaluate me for Sjogren's, even though I didn't have the antibodies for it. I was told the antibodies I have for Limited Scleroderma can sometimes be seen in Sjogren's patients. That's late next week.


    Thanks for the reply!



  10. I read that it's common for those with scleroderma to also have celiac disease. Since I was diagnosed with celiac first back in 8/10, I have been experimenting to find some favorite dishes. I thought this might an interesting thread for us to discuss our favorite dishes and/or tips for gluten-free eating.


    My breakfast is usually a fruit smoothie and a muffin. Simply putting frozen fruit such as bananas, peaches, pineapple, and/or mango into a blender with (rice) milk has been great. My muffin flour is a mixture of sorghum, millet, potato and tapioca starches. I always make them 'healthy' by using pureed bananas, squash, beets, blueberries, pumpkin, etc. Easy to take out of the freezer and a quick snack on the go.


    What are your favorite tips and/or meals?



  11. Hi Christine:


    To be honest, this subject really hadn't crossed my mind. Disability insurance is so expensive that I just always thought it was something I would never purchase. I can see the benefit of it, especially when health problems arise and there are family obligations. It's like any other insurance, they want you as a customer as long as you're not going to use it! Insurance gets me fired up! Take care and I hope you find a good solution!



  12. Hi Shelley,


    That's interesting. I hadn't thought about that being a possibility that it can affect employment and insurance. Does that happen in this day and age? I want to know exactly what I have when all the testing has fine-tuned their suspicions. I think for the simple fact that it helps us to know what to watch for so we can get care early in the stage. For example, sometimes we have a symptom that we didn't know was a symptom. Lori's daughter is so young that something may seem normal to her because she doesn't know differently. Of course Lori will be an excellent advocate for her daughter's health.



  13. Yesterday I had an esophagram and I was told it was normal. So I wonder how that will fit into the picture. I have gastroparesis which has worsened in the last few months. So far all the doctors I've met give me quasar looks at this situation because generally the esophagus is affected before the stomach, and if the stomach is involved, then I should be 'sicker' with other symptoms. So, I'm curious if anyone else has this situation? Can sclero affect the stomach, but an esophagram be normal?




    (positive for limited sclero (no skin involvement yet), hashimotos, celiac)

  14. Hello! I don't know what this would be related to, but I can't seem to find a name for it. When I get out of the shower (which I don't take overly hot showers) the tops of my feet (and sometimes extending up to my knees) will have a red spotted rash on them. I've also had it on my chest and neck. It's not raised, nor itchy or bothersome. It fades, but I haven't noticed how long it takes to fade. Obviously a reaction to heat. Anyone else experience this and know if it's called something specific or even what it could be related to?



  15. Thanks, Marsha! I don't believe I have another choice nearby for GI doctor, especially for one familiar with AI diseases like sclero. We live in small town PA and have to travel 2-3 hours to see specialists. So it'll be interesting to see how this all plays out after my next rheumatologist visit. That info is interesting in the link that Jeannie provided on the thyroid. Amazing how sensititve that little organ is!

  16. Jeannie:


    Thank you for your reply! That's very interesting. That makes me wonder if I'll eventually be diagnosed with sine scleroderma. For the time being I'll just be patient and wait since the doctor at the lupus center wanted me to come back to her in 3 months. I'll do that and at that point I believe I'll bring up 'sine' and ask about referrals to a sclero specialist and a GI doctor with experience with sclero. I don't like leaving an office with the feeling I had yesterday.



  17. My GI doctor came in smiling and asked me what was new. I told him I have Hashimotos and just got on meds yesterday, and I tested positive for limited scleroderma. He seemed quite shocked and asked what other symptoms I had that led me to a rheumatologist. I told him mild Raynaud's, red face, dry eyes and mouth, dry skin & cuticles, GI trouble (celiac, burping, gastritis, gastroparesis), tiredness, and a positive ANA of 1:320. His response to me was that the GI trouble I'm having is usually seen in diffuse, not limited, and is usually seen when the diffuse scleroderma is bad, which would include severe skin involvement and other symptoms. He has no answer for why I have excessive burping since antibiotics didn't help the suspected SIBO (small intestinal bacterial overgrowth). I left feeling like he doesn't believe I have limited scleroderma. He said he is very interested to see what additional testing the rheumatologists do and which systemic sclerosis I have so that he knows better how to treat me. I don't know what to think. I thought I've read here that there are others similar to me? Does anyone here think that what I'm experiencing is not typical of limited? Or is there another category I fit into?