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Posts 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. 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. <_<

  3. 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:

  4. 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!

  5. 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!:jump-for-joy:

  6. 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.

  7. 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?

  8. 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.

  9. 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!

  10. 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.

  11. 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:

  12. 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. :jump-for-joy:

  13. 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.

  14. 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 new in my environment or lifestyle. I guess this is one for the doctor too.


    Thanks for the information and suggestions!

  15. 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 stiff and painful. I take two of my husbands prescription pain pills before I go to bed at night and an anti-inflammatory and can still feel the stiffness and pain. This causes a weakness in that arm and if I try to pick up something too heavy I get a sharp, shooting pain that radiates both directions through my arm, from my elbow. I do not see visible swelling. I have had no injury to the elbow or arm for that matter. Any thoughts?


    I do have Raynaud's but have no other official diagnoses. I do suspect Scleroderma and have had a doctor mention I had some mild signs of Sclero though.

  16. 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.

  17. 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? :thank-you:

  18. 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 knowing I cannot schedule a doctor's appointment will only serve to make me feel worse. Who needs that?! I wonder though if I will remember enough of the symptoms that I am trying to push to the back of my mind.


    I have recently started having these almost "stinging" pains that fire throughout my entire body. There are times when my ankles and feet are so stiff and so much pain is in them that I can barely walk. My hands become so stiff that I feel like I shouldn't even try to move them; or if I can move them their use is minimal (can't open jars, etc.). My pain is sometimes so severe that my sleep is disturbed (sometimes for multiple nights in a row). I try to tell myself that maybe I am aging quicker than others my age. I have had strange rashes and my mysteriously appearing bruises and spots keep coming. Scratches and minor cuts do not heal quickly and months later the scarring is still visible. My skin on my hands still splits spontaneously. I just wonder if I am crazy sometimes.


    My Raynaud's is as severe as it has ever been and the thought of winter coming is scary this year. My heartburn is poorly controlled even though I take a prescription for this. My swallowing difficulty remains unchanged (occurs on occasion).


    I wish the very best to each and every one of you. ;)

  19. 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 developed several red/purple spots clustered together. I have two dark purple spots close to that area. Under my right breast I have a dark purple spot. On Thursday night I started developing what I thought was a cold sore on my lower lip. It started secreting a yellow/gold colored substance on Friday night and by Saturday night was gone but left peeling skin on the lip. I have never had a cold sore, untreated, come and go so quickly so I have no idea if that's what it was or not. I have had quite a bit of trouble with my breathing lately and pain in my ribcage area. I have been a severe asthmatic since I was 9 years old so I have no idea if it is from that or something sclero related. My asthma has been very well controlled for over 6 years now with corticosteroids so I am not at all convinced that is what is causing the trouble. I have a few other things but basically the gist of the idea is that I feel like everything is moving so quickly suddenly and that is what is scariest to me. Well that and the fact that I can't even get in to see a doctor!

  20. 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?

  21. 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 mouth open wide enough to place a spoon, fork, etc into it. This usually last for a day or two and then goes away. The corners of my mouth feel like they may split open if I force it and there is severe pain the jaw joints themselves. The other symptom I forgot to mention is that I have difficulty swallowing from time to time. This can happen even if I am just trying to swallow liquid. If it is a problem with liquids I can ease that problem by drinking slower though.


    Does anyone here have any personal experience/knowledge of the skin issues I mentioned in my original post?


    Thank you everyone!



  22. 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 dialysis twice a week), and I remember his fingertips being basically black and very sensitive. Okay, back to me.


    I talked to my primary care physician and he ran the bloodwork to test for lupus and scleroderma and they came back negative. I should tell you that I am on an inhaled corticosteroid for asthma and take the highest dose possible and have for many years. Prior to that I took oral corticosteroids (prednisone) fairly consistently, also for many years. I have been told this can affect some of the tests like the ESR. I decided to accept the test results and just move on. Well my Raynaud's started to increase in severity again. I thought it was odd that it was progressing so quickly all of a sudden and asked my primary care physician to refer me to a rheumatologist about my Raynaud's. He decided, based on my concerns and his observations (he told me he thought my fingers showed some clubbing and that my hands did show some mild signs of scleroderma), that he would refer me. The rheumatologist met me and while he was friendly, most of my appointment was a chat session. He reviewed my medical records, talked to me, and looked at my cuticles and said it was primary raynaud's. He did not do the capillaroscopy. He suggested that each fall I come in for Raynaud's treatment.


    My primary care physician had also placed me on a medicine for suspected acid reflux. I have it daily and frequently throughout the day. The medicine did work at first and it has since stopped working; even water can cause a heartburn attack. My Raynaud's is pretty active right now and I have started feeling it in my feet now. It was primarily in one finger on one hand when it started. That is how it was when I talked to my primary care physician during my annual exam but this past winter the frequency of the attacks and their length had increased. I have to take hot baths to warm up almost every night (it is summer!!!), wear long sleeve shirts (even outdoors sometimes), and drink hot drinks to keep me warm. I have this type of skin splitting on my fingers and hands. It occurs in fatty areas such as fingertips and the areas on the palms just below the fingers. It also occurs along joints. Basically they are round areas of the skin that split and it seems split through layers. I would describe it as what a jawbreaker looks like if you cut it in half (only not colorful...lol). There is no pain and tenderness in these areas. My latest one of these (inside of thumb along the knuckle) did have a hard yellow core though and took a little longer to heal. My fingertips are more sensitive than they ever used to be though. I do have the extreme and sometimes debilitating fatigue.


    Okay now the question: Am I crazy or does this all sound like something I should pursue with a doctor? I guess I am most alarmed because of the fast progression of my known symptoms and the family history (I do know this is not a hereditary disease but that there is a genetic component to it, sometimes).