Jump to content
Sclero Forums

Chopper

Members
  • Content count

    126
  • Joined

  • Last visited

Posts posted by Chopper


  1. I'm adding my welcome too! GI involvement is my main symptom as well. I tell my friends when they ask how I am, "as long as I follow the rules of my diet, I feel great", but I still get attacks and frustrations out of the blue. If I didn't follow a strict diet specific to my particular situation, I would be frustrated and sick more often. I am still new in my diagnosis as well, and there is a wealth of info here. Even try searching old posts for subjects of interest. Wish you and your husband well! :VeryHappy:


  2. Hello!

     

    On Tuesday I will see my GI doctor, who may not know yet I have limited scleroderma. I want to make it a productive visit, of course. I've searched older posts here, and I see there are others similar to me (GI trouble, no/little skin involvement). I started having symptoms of gastroparesis in August and it has worsened since then, which of course concerns me for the future. I am not on any 'sclero' meds. So, I want to ask him, do you care for other patients with scleroderma with gut involvement? If not, should I see a GI doctor who does? Or if so, what should we be prepared for, test for, or watch out for?

     

    I appreciate any additional advice or suggestions for questions.

     

    Thanks a bunch!

     

    Chopper


  3. Queenie - thanks for replying. Since I am new to this sclero-thing, what you described is how I'm feeling.

     

    Shelley - Thanks for your reply as well. When I had my consultation with two junior and senior lupus specialists, I was told they follow several patients with unspecified connective tissue diseases that experience flushing like they saw in my face. So when my blood work came back showing positive antibodies for only limited scleroderma and autoimmune hypothyroidism and none of the others (lupus, RA, sjogren's), I assumed the flushing was connected, particularly since I noticed it worsening at the time of other symptoms appearing (raynauds & tangliectasia & gastroparesis). From what I read, only overactive thyroids cause flushing, not underactive - which I have.

     

    The confidence you have in your reply concerns me that maybe there's something else that we need to diagnose. I will definitely bring it up at my next appointment in 3 months. Thank you.

     

    Hmmmmmm. Chopper.


  4. Hello! Welcome to the forum! I'm new here too. I also have autoimmune hypothyroidism, which I think they call Hoshimotos. To be honest, I don't think I have symptoms, and I'm not on medicine yet because I don't see an endo for a couple more weeks. I do know from family experience that it's a very important medicine, so I have taken the diagnosis seriously even though I basically feel fine. Keep us posted!


  5. When I gave up coffee, I started the hunt for a good herbal tea, and I found a wonderful substitute in rooibos (roy-boss) tea. My favorite flavors have been tiramisu for the mornings and peach for the afternoon/evenings. There are many wonderful flavors though. I even noticed a nice side effect in my complexion. With so many diet restrictions that I have, I'm so glad that I can still handle dark chocolate!


  6. Thanks for sharing your tip! I didn't know I had Raynaud's until recently, maybe 2 months ago. This winter, even with thick gloves on, my finger tips would hurt so bad and I just assumed it was because it was a bad winter. But even when I was indoors, when I would get my frozen fruit out of the freezer to make a smoothie, my finger tips again would hurt and go beet red. I thought I was turning into a sisssy! When I started looking for an underlying cause of my gastroparesis, and started reading about connective tissue diseases, I realized it was a symptom! It's so weird that touching something frozen can hurt so quickly. Weird disease. I think I will take your advice and get me some gloves to keep by the freezer!


  7. I was reading in the forum guidelines of things you can and cannot post and I was surprised to read about caffeine sensitivity and it's adverse affects on scleroderma and raynauds. For several years I have been sensitive to any caffeine and I wonder if that's not a coincidence. I hate the way caffeine makes me feel, terrible dizziness, and coffee even makes my face breakout!


  8. Jeannie - I'm glad you said that about the fingertip pain. I truly don't know if it's a symptom. A couple weeks ago another finger was like that, and a few days ago I had the same pain on the fingertip of my ring finger, so now that my middle finger is doing it too, I assumed it must be a symptom. My hands have been feeling like they're a little puffy lately, the feeling like when it's humid and you're hot. But we've got snow today! Maybe this puffiness is making them more sensitive. We'll see what happens. The other two times it only lasted a couple days.

     

    Amanda - Yesterday I read an article here on how the spots can be a marker for heart issues in something like 56% of people with them. That is so weird! Maybe I should get my bp checked more often!


  9. Up to this point I haven't had too many external symptoms. However, every day I notice a new 'red spot' which I believe are the Telangiectasia. (I did a search here and read in another post that they disappear with pressure and reappear right away when pressure is removed, which mine do.) I don't have many yet, maybe 15 or so, on my lips, hands, chest and trunk. My lips have felt so weird in the last couple weeks, like chapped, but not chapped? Hard to describe. But I'm starting to get the red spots around the edge of my lips and even a couple on the lips (none inside yet). And I woke up during the night last night because my middle finger beside the nail is inflamed and tender to touch. And, of course, these make me wonder - what's next? Lots of red spots? All of my finger tips inflamed? Time will tell, but it's a weird feeling!


  10. Hi Jane,

     

    I will echo Jo's comments about being your own advocate. If it wasn't for me searching and pushing for a diagnosis and care, I hate to think how'd I'd be feeling right now. It's not right, but unfortunately that's forced upon us in many cases. I sure hope you can get everyone on the same page and get something to give you more relief of your symptoms. Sorry I'm not help in this department, but maybe someone else will be.

     

    Warmly,

    Chopper


  11. Mollie,

     

    Thank you for your reply. I had a feeling that the two were probably not connected. When I was diagnosed with general practitioner I consulted with a dietician online who specializes in gastroparesis. She was soooo helpful and really knows her stuff. I feel I have been able to avoid alot of pain and/or discomfort by following her suggestions. I can still handle solid foods, but they are soft, small portions, and are low fat and very low fiber; and it seems the erythromycin helps.

     

    What has the weight loss been like for you, for example, are you at a healthy weight that you're able to maintain? Do you take nutrition supplements?


  12. Jeannie,

     

    Thank you for your reply. It was a young doctor that I met with, so maybe she was just giving a hopeful thought. From what I've read so far, and your input, it seems this just comes with the territory. The silver lining is I'm finally back to the weight I was in junior high! That part, and only that part, has been nice!


  13. Hello,

     

    Since gastroparesis (GP) was discovered last August, it has slowly worsened. The low fat/low fiber diet wasn't enough, so I now take Erythromycin before each main meal (3 times a day). I also take 20mg daily of omeprazole. When I got my diagnosis of limited scleroderma this week, the doctor said they weren't putting me on any meds. I'll soon be put on thyroid medicine when I see an endocrinologist, and the doctor is curious to see if that will help with the gastroparesis.

    Has anyone here noticed that medicine for underactive thyroid improved their gastroparesis? If not, has their gastroparesis stayed somewhat constant, or does it cycle? I'm wondering to expect in this department.

     

    Thanks,

    Chopper


  14. Thank you all for your warm welcomes! You made my day! It's so wonderful that this resource is available, and all of you too giving your time to encourage one another! I hope I can be a positive force too!

     

    I am not currently seeing a scleroderma specialist, however, the young doctor that saw me at the Lupus Center of Excellence told me she is going to specialize in scleroderma and she already works at another hospital with 'the' scleroderma specialist in Pittsburgh. So I kinda got the feeling when she called me with my diagnosis that she's glad I came along and that she's looking forward to following me. Sometimes there's a benefit to seeing young doctors, they're motivated, and can hopefully develop a good rapport in the years to come.

     

    Chopper


  15. Hello All!

     

    I've skimmed through a few threads and I think I've found the right forum! What kind and informative members!

     

    I am a 37 year old female. I was diagnosed this week with limited scleroderma and autoimmune hypothryoidism. I was diagnosed celiac the past August. What led to these diagnoses was gallbladder removal in the fall after 1 1/2 years of chronic mild pain, followed by gastritis and worsening gastroparesis. I had a nagging feeling the there was an underlying cause so I went searching for it and this is what we've found. At this time I don't have skin issues other than general dry skin and bothersome cuticles. I don't have positive antibodies for Sjogren's though I have the overlapping symptoms of dry eyes, mouth, etc. I also don't have typical Raynaud's though I am sensitive to cold and have mild color changes and numbness. Face flushing. Crunchy joints, though not much pain and no inflammation. I've had only an initial consultation with a Lupus Rheumatologist. Soon to get an appointment with an endocrinologist. I have GI doctor as well.

     

    I look forward to learning from you all and sharing in some good discussions. I don't know very much, so feel free to point me in any direction that might be of interest to me, (particularly in the area of gastroparesis or GI issues).

     

    Thank you!

×