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debo_92

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About debo_92

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  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 doctors. I found his bio online and found out he is 75 years old and graduated from medical school 50 years ago. I am sure he is definitely old school!
  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 was planning on treating symptoms (which he agreed all are symptoms of scleroderma), I decided to drop that issue. At one point he decided that my deceased grandfather's diagnosis was wrong based only on me telling him that my grandfather had been diagnosed with systemic lupus and crest syndrome. He told me that my grandfather probably only had one of those. Really? He has never seen my grandfather nor any of his medical records so how would he know? He tells me that I am a sick person and need to remain treatment compliant or risk worsening my condition (you mean the condition you insist I don't have?). He believes I may have degenerative disc disease and I need a lumber spinal x-ray. He also orders a lupus panel (why lupus? I have no idea) and clean catch urinalysis. The latter was ordered to results of a previous urinalysis from May of this year. He tells me that I need to be monitored more closely than I have been. I was also ordered PFT's and a Barium Swallow Test. All this for someone with no diagnosis. Oh wait, he agrees I have Raynaud's and that is it...lol. He wants me back there in about 10 weeks. He is a much older doctor and I am sure that is where a lot of his beliefs come from. The best news about all this is that it is a temporary situation and my symptoms are being treated! My family and I plan to move out of our current state next summer so it will be a whole new doctor then. Thanks for listening!
  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 clear. At the end of the appointment he placed me on Medrol for a week. He told me that if my symptoms did not clear up, got worse, or new symptoms appeared that I was to call his office. He said at that point he would contact the rheumatology department to have them get me in to see the new rheumatologist prior to my current appointment of August 10. I told him I was concerned that my fingers lost circulation while I was already being treated with medications. He said that the medications may still be working. He said this episode could have been a lot worse if I weren't already medicated. I never thought to ask him what the Medrol was supposed to be treating...fingers or lungs? My fingers have better moments right now so hopefully they are almost over this latest episode. I think 6 days is a long time for a Raynaud's episode.
  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 test results seem to show that I have some inflammation going on at this time.
  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 doctor. I hope to hear back from my doctor's office on Monday! You are all a great group of people and I am happy that I have this site to come to!
  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 about two weeks now but do not have Raynaud's episodes. I will not push for a diagnosis to go in my chart at this point. Just want my symptoms treated. I feel like I probably do have CREST so I think the doctor was right.
  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 the diagnosis is a bit shocking. I did get him to tell me how I would know if I developed lung involvement as I am already a severe asthmatic. Of course he sent me down to the lab for the 10 vials of blood for testing! Last year's tests did not show any bloodwork indicative of a problem. I am having some very serious joint pain over the last 5 days. Any suggestions on how to alleviate some of that? :wacko:
  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 me until after 4:30 this morning to fall asleep. Do x-rays show all joint issues? I am wondering if I could have some issue that an x-ray does not always pick up.
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