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Everything posted by debo_92

  1. Well this is another nasty little problem this illness causes. I felt so bad I thought I might die and was okay with that! I was so glad on Sunday when I felt like I might actually live and was okay with that too!!! Thanks for responding; at least I know I am not the only one who has this issue.
  2. Do any of you experience an increase in joint pain when you have a cold or other common illness? I recently came down with a very nasty cold and my joint pain was through the roof!
  3. Well it doesn't take much patience when I realize he is only one doctor. He is wrong about how a diagnosis can be made and I will work with him to treat symptoms for now. I go in next Tuesday for my Barium Swallow Test and the 27th for my PFT's. My bloodwork is already out the door and heading for testing at the lab. I think he is only testing for Lupus and not even doing an ANA test again so I doubt it will be very helpful...unless it turns out that I have lupus. <_<
  4. Well that sounds like quite an interesting doctor to deal with. I have read enough online to know that being told you have an autoimmune disorder and then it being taken back happens frequently enough. I am not at all rattled about that for sure. As long as they treat my symptoms I don't care why they are doing it!!! I do think contradicting yourself in the same office visit is a bit out there though. I guess the good thing is that if we get really concerned about a doctor, we can choose to go elsewhere...lol. :emoticon-bang-head:
  5. I am glad that this doctor is at least treating my symptoms and wanting to monitor me, definitely! I just hate the contradictions he tells me during a single visit. He tells me I am not a well person and my condition will only worsen unless I remain medication compliant and have more doctor visits but then tells me I only have Raynaud's. Well which is it...am I sick or just simply have Raynaud's? That is what is frustrating. I guess at least there will be documentation of his monitoring that a new doctor can look over and help to make a decision about me...lol. I guess we just have to love do
  6. My previous rheumatologist left the clinic where I am a patient. I got to see his partner to get established with him just today. At my last appointment there my previous rheumatologist advised that even without serological evidence, he believed I have limited scleroderma. I agree with that assessment. The new rheumatologist not only did not agree but he also had a lot of contradicting thoughts. He insisted that without serological confirmation that no diagnosis of scleroderma can be made. I did try to discuss my research into this area but he was definitely not interested in hearing me. As he
  7. I wondered about the red spot myself. It looks like a burn spot and is painful to the touch. I didn't burn myself so I have no idea.
  8. I saw my primary doctor, an internist, on Thursday afternoon. He found that there was very little circulation to my index fingers. He started to talk about putting me on a blood pressure medication for the Raynaud's. I told him that my previous rheumatologist had placed me on nifedipine two months ago and that was why I was worried that my fingers had gotten to this point. He did not seem too concerned about the red spot on my one knuckle though. I had also had some pain in my lungs the previous night but no problems breathing. He listened to my lungs (I am also asthmatic) and found them to be
  9. I have called my doctors office and am waiting to hear back about whether or not they want to see me. The nurse seemed to think he would want to so we will see!
  10. I have a red spot on one of my knuckles of my left pointer finger. Both of my pointer fingers have felt like they are numb from the top of the finger down to the first knuckle for a few days now. I am seeing a new rheumatologist but not until next month. Is this something I should call the doctor at the community clinic about?
  11. I realize that no test can definitively say you have an autoimmune disorder. I am however wondering about the results of a couple of my tests. My doctor has already said that everything came back "normal", but after getting my test results I am not sure I agree. My ESR is 16 (according to the lab normal range is 1-15) and my CRP is 1 with normal or negative being considered anything <1. I realize that neither of these numbers is very high but they are out of the normal range.I know that last year my ESR was 14. I can't see where they ever did the CRP on me last year. I feel like the
  12. Thanks again for the great responses. I know the wonders of prednisone (I think all severe asthmatics do!) but I also know the dangers. My grandmother was on it as the main form of treatment for her asthma for her entire life. By the time she passed away her spine had collapsed in on itself, she bled if she bumped her leg on a padded chair, and was quite obese. All of this was due to the prednisone. I know that there are times it is absolutely necessary and I do take it then, I just choose to try everything else possible first. I will keep it in mind though as a possible suggestion to my docto
  13. Thanks for the responses and the flowers! I called the doctors office today to get my test results. My labs still do not show any indication of either lupus or scleroderma. I wonder if I will be one of the few people who do not have it show up in their bloodwork. My joints are so horribly stiff lately that I can barely walk. I think I will call my doctor's office back tomorrow and see if he wants to do anything for that problem or not. He made the diagnosis based on my Raynaud's and esophageal issues (reflux and periodic trouble swallowing). My feet have been in almost constant pain for a
  14. I saw a rheumatologist last week. This is the same one I was referred to around this time last year to have my Raynaud's checked. Last year he told me I had primary Raynaud's and to see him in the fall to plan for winter treatment. I lost my health insurance and could not go back. I went back this year and after speaking with me and doing a brief exam he told me he is confident that I have limited scleroderma (f.k.a. CREST). He then said he was not sure he wanted to label me yet as I am still without insurance. I have suspected limited scleroderma since my visit to him last year but to hear th
  15. I sometimes think I am just driving myself crazy with all the questions I have about everything that I now notice about my body. I don't even have a diagnosis yet! In any event, I have had considerable joint pain for an extended period of time now. I have an elbow that has been extremely painful for almost three months now. I don't have health insurance but was just able to get into my local community health clinic. The RNP there sent me for an x-ray. I just got those results today and was told they are normal. My pain was just so severe last night that even after 2 pain medication's it took m
  16. I appreciate that information. The worst thing for me is that I have no medical insurance right now. I am going to pay out-of-pocket for my annual exam but there is no way I can afford an MRI. I just got offered a chance at a full-time, permanent job today but it seems they want perfection 5 days a week plus 2 Saturdays a month and no benefits. I didn't think that sounded like the best idea for me so I had to pass it by. I hope this is a temporary situation. I will see what my doctor says at my annual exam. I will try the ice thing for now though.
  17. I do a lot to try to rest my arm right now. I do get similar pains in both knees and my shoulders on occassion but they do not last nearly as long as this one elbow has. It is frustrating. I don't need the lecture, I know the dangers :blush: . Unfortunately when you have no insurance you get a bit creative in meeting your medical needs. I will definitely be seeing my doctor in the near future though and see what we can and can't get done. My feet are driving me crazy for sure. I wonder if it is dry skin but then think that I have never had issues with this before and there is nothing
  18. Okay, so maybe this is completely unrelated to Sclero issues but thought I would try getting info here anyway. My feet have started getting painful in the middle of the night (I have a high pain tolerance and can generally fall back to sleep without needing meds or being up too long). Then on the bottoms of my feet, on the pads below the toes (primarily under the big toes) my skin is thicker and peeling really badly (some spots are almost raw). Could both of the issues with my feet be connected and could they be sclero related? Another new issue is in my left elbow. It is suddenly very sti
  19. That sounds just like what I have. I can still see the scars from some I had months ago. I know that when I have them I can't let water touch them. If I do they hurt so bad it brings tears to my eyes. Thank you for the responses so far.
  20. I am wondering if you have an ulcer, mine (or what I believe are ulcers) are typically mild, how it looks as it heals? Mine seem to heal from the outside in. They heal in stages and it is sort of like the segments of a telescope if you look at them from the top when they are all pushed inside each other. Then after they heal I still have a thickened, smooth, patch of skin that is the shape of the outside of previous ulcer. I can still see evidence of ulcers I had 6+ months ago. Does this sound like a digital ulcer to you?
  21. I am still a newbie here and have only posted briefly previously. I have taken time to read many of the posts though. I find courage in those members who write about their struggles first with a diagnosis and then with coping when the diagnosis is made and treatment begins. I find camaraderie in those who are like me...waiting and wondering if a diagnosis will ever come. I am still without insurance so I can't even work toward a diagnosis at this point. I keep an eye on my symptoms but not so much that I will drive myself crazy. I feel like focusing on all visible signs that appear while k
  22. I am really hoping to get a doctor soon myself. However, I don't have any insurance right now. Even if I could get into a community health care clinic, get someone who knew about Scleroderma, and get the care I need...all that will make me uneligible to get health care insurance. It is so frustrating!!!! I am having Raynaud's attacks by just walking into a grocery store, or even into department stores. I have multiple attacks a day. They are starting to occur in my feet. I have pain occurring in my hands, feet, ankles and chest. I discovered an area under my left breast where I have develo
  23. Thank you for your suggestions. I have had two new things crop up over the last 24 hours and I am wondering if they are at all sclero related. One is a small rash on my lower leg. It is red and what I would describe as "peppered". The second is I have 3 red horizontal lines that appeared across 2 of the knuckles on the "non-palm" side of my hand, just below the fingers. I thought I was bleeding but it doesn't wipe off. There is no bruising and I don't remember any injuries today at all. Anyone know what these could be?
  24. Janey, Thank you for the support and information. I totally expected that the rheumatologist would do a capillaroscopy to see if any abnormalities were present and possibly some other tests. The only other test he did was a bone density test (mostly due to my steroid use and the fact that I have never had one done before). I totally intend to keep looking for another specialist to go to but without insurance my options are limited at this time! I hate not having insurance. I did forget to mention a couple of other issues I have had. One is that I have episodes where I can't get my mo
  25. I will try to keep this as short as possible. I was diagnosed with Raynaud's during my annual exam this year. I have had symptoms for a good 6+ years but they only occurred occasionally and weren't too severe. This past winter that changed and that is why I brought it up to my primary care physician. I told my mother about the diagnosis and she got concerned because my paternal grandfather had CREST Syndrome (and Systemic Lupus) and he had a very quick (less than a year) progression and subsequent death. His progression included not being able to eat (had a feeding tube), kidney failure (had d
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