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Climber

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About Climber

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  1. Thank you so much Amanda for putting my mind at ease on the Plaquenil. I'm not in any great hurry but I think I will ask my General Practitioner for a referral to an Opthamologist for a baseline next time I'm in to see him just to be safe, but since I don't have any appointments coming up with him I won't worry about it right now. I'm so sorry you are doing so poorly that you can't self advocate. Do you have any family that are willing to learn the medical jargon and advocate for you? I do understand, I also have those days and while my husband is a wonderful caregiver he does seem lost when it comes to medical terminology and not too interested in learning. But I think (well I hope anyway) that if my bad days become so many that I need him to that he will educate himself to advocate for me (maybe??). I also understand the GI problems - that was what started my whole road to diagnosis -- I lost 30lbs in a few months and was only maybe 10-15 lbs overweight to begin with. Besides Reflux I also have gastroparesis and I struggle with controlling it with what I eat - lots of pureed foods and smoothies. Ocassionally I take Metoclopramide but the side effect profile of that drug is scary so I try to stay away if I can. I have gained back 8 of the 30lbs and my GI doctor is pleased. I hope things start looking up for you with the GI symptoms and loss of weight. You are in my thoughts. Also I agree that doctors have too many patients and not enough time -- it's the same in the US see my new post on Shortage of Rheumys. Hope you are doing better!
  2. My Rheumatologists office states on their website that there is a shortage of rheumatologists in the US and it is projected to worsen over the next 20 years. It states that the average wait time for a new patient to see a rheumatologist is 2-6 months. It goes on the state that The American College of Rheumatologists recommends using Nurse Practitioners(NP) and Physicians Assistants(PA) to bridge the gap. My first 2 visits as I was gettting diagnosed were with my rheumatologist but now I never see him and only see the PA. She is supervised by him and once when she had a question she brought him up into the room to check me out and when she added Plaquenil she ran down to counsel with him first and he instructed her on the dosage etc.. so everything seems to be directly supervised by him they operate in teams like that where each NP or PA works under a certain doctor. Just wondering since there are people from all over the world and all over the US how it works in your area? Does there seem to be a shortage in your area? Do you see a rheumatologist for every visit or sometimes an NP or PA?
  3. Sorry, Miocean about all your complications with your different 'ologists. How challenging it is to have to second guess your 'ologists recommendations because they aren't understanding the big picture and your other medical issues. It seems because there is so much medical knowledge now available that health care has become kind of like a factory with each specialist mostly understanding only their own specialty and not understanding the other medical problems we have and since our body systems all work together this is not always the best program. It's a shame that they are so busy and most don't have the time to coordinate with each other and for the most part it seems to me like our primary care providers are not much help either. At least mine isn't, not that he isn't a nice man and doesn't want to help but he doesn't seem to do much in coordinating or communication between my specialists. The only thing my primary care physician seems to be there for is minor acute problems like respiratory infections or UTI's or the like. It's interesting many of my 'ologists will ask me to have my other 'ologists send them their reports and things but none of them will volunteer or ask who they should send their reports to. I was refreshingly surprised when the cardiologist I visited for testing asked me to list all my doctors and told me he would be sending the results from all my tests to all my other doctors. Sure enough, when I went for my chest x-ray he had listed all my doctors were to get copies of my x-ray report. The girl at the desk looked at me and said "Do we really have to send copies to all these doctors?" She seemed kind of annoyed and I hesitated for a moment but then said yes. After a recent rheumatologist visit I received a phone call that my Vitamin D level was very low and I was given a prescription. I asked if the rest of my blood work was normal and the girl said yes. I almost let it go but then asked if she could send a copy to me and then to my GI doctor and Hematologist. She said she would have to check with the Nurse Practitioner who I saw to see about sending the labs to the other doctors. I'm thinking -- why -- they are my labs if I want my other doctors to see them isn't that what should be done. As it turned out when I received my copy I found both my Hemoglobin and Hematocrit were low again -- both things my GI doctor and my hematologist are concerned about and need to know about. Because the levels were not dangerously low they didn't bother telling me or my other doctors. We really need to be our own advocates -- it seems doctors are just too busy these days -- even sometimes for things that are part of their specialty. I was recently started on Plaquenil (about 3 months ago) and I know I need to have my eyes checked for a baseline. So at my recent rheumatologist visit (with the PA) I asked about a referral to an opthamologist. She said -- Oh you don't need a referral -- just look one up in the phone book and call to make an appointment. Then I asked -- won't my insurance need me to have a referral. She said she didn't think so but if anyone should do the referral it should be my primary. This makes no sense to me since she's the one who prescribes the Plaquenil not my primary. And also -- if I hadn't said anything about needing an eye exam she would never have brought it up. I wonder how long she would let me be on Plaquenil without checking if I had ever had an eye exam. I guess we really need to be on top of our own health care. It is really scary for those who either don't inform themselves and keep track of things themselves or those who have difficulty understanding and comprehending such things or are too ill to even think straight (I've had those days)!!
  4. I'm so sorry Judy. I can sympathize. I have pretty bad gastroparesis and have been managing with soft foods and smoothies but finally bit the bullet a few weeks ago and tried the Regan(metaclopramide) my GI doctor has been beggging me to try for months. I was afraid because of the side effects. I also upped my PPI because of gastritis and reflux. So far not helping much. I have managed to gain back a few pounds by forcing down the smoothies -- I put coconut milk in them to add to the calories that's the only way I can tolerate fats. I sure hope your appetite improves! I heard you mention you slept all night -- wonderful! That is when my stomach bothers me the most and I rarely sleep all night from either the stomach or the joint pain. I hope you have a pain free day and that a wonderful hot fudge sundae or mashed potatoes and gravy or whatever soft food is your very favorite is in your future. Feel better soon!!! -- Climber
  5. Just wanted to pop in and give my Congrats!! Congratulations Miocean on your 2 year anniversary may there be many, many, many more !!!!!
  6. And believe it or not MCTD is even less popular. It is mentioned even less and some years back even doctors argued whether it even existed and there are probably still some left who still don't. So MCTDers might be last among the last I'm so glad your group was kind of me to let me join as there is very little in support groups for MCTD. There is also very little in research, clinical trials or even information on MCTD. Many consider it of the scleroderma spectrum so I'm happy to join and learn here. The worst part of it is explaining it to anyone. I know there are many who have never heard of Scleroderma, it isn't as common as lets say lupus. But there was a movie about it and so I have found many who have heard of it but most know precious little about it. But try telling someone you have Mixed Connective Tissue Disease -- that is a mouthful. MCTD also gets a blank stare. Then try figuring out how to explain it -- do you go through the 3-5 diseases you could have symptoms of -- where each disease has their own long list of possible symptoms -- do they really want to hear it or have time to hear it, it could turn into a very long discussion. But ahh yes I know all of you do undersand for you each have your own flavor of this Scleroderma Spectrum and there are so many flavors and there are so many possible symptoms. How do you all decide how much to share with someone before their eyes glaze over.!! Blessings -- Climber
  7. I want to thank everyone for their welcomes. Joelf, it is so neat to find someone who understands my fascination with studying these medical topics. My friends and family think me quite strange. Some have suggested I go back to school and become a doctor(at age 45-- I don't think so). They think it's crazy how much I know about my disease and the medical jargon I've learned. They are all content to trust their doctor's implicitly and don't really want to know much; for some it scares them too much. I try to explain that it isn't that I don't trust my doctors it's that doctors are too busy and can't possibly be up to date on all rare diseases and conditions, no matter how caring they are. I feel with a chronic disease it's pretty much mandatory to understand what is going on in your body and I can thank all of you for I have learned that on this site. But for me, it is even more than that -- strangely I actually enjoy studying this and Joelf it is wonderful to have found a kindred spirit and to know I'm not the only strange one. Thank you all so much for all the enjoyment you have given me with the wealth of info on this site and all the wisdom you share on the forum-- Climber
  8. Oh no, Miocean, I would never take anyone's trophy. I read the thread; I never noticed that part of the forum, thanks for pointing it out. You all seem to have so much fun on here despite the suffering. What an encouragement! I was never thinking I'd win any records on here for 'ologists' as I know you all deal with so much, it's just so shocking for me. I actually went 20 years without a general practitioner never took a medicine except a vitamin. I was one of those health enthusiasts who did everything natural and didn't need doctors, going from that to finally finding a general practitioner and adding a Rheumatologist, Gastroenterologist, Hematologist, Neurologist and now a Cardiologist (Find out this week if I'll need him anymore), and adding medicines like candy all in one year is just sort of shocking to the system. I tried all the natural remedies I knew and finally decided I needed help. Thanks for showing me the Fun and Friendship forum and I hope all your 'ologists' are able to help you. Please by all means keep your trophy!!! You deserve it from what I have been reading on here!!! I'm new but I've been reading and am inspired by your courage through all you've been through. I feel silly complaining about any of my minor troubles which pale in comparison. Thanks for being an inspiration! Climber
  9. Hi Mando, It is nice to meet with you. For the most part my doctors are okay with me researching. My rheumatologist actually told me to google MCTD, I guess it saved him time in having to explain everything. I do have the specific antibodies for MCTD the only thing I am missing are Polymyositis symptoms. The rheumatologist at Cleveland Clinic seemed to think I might be an early stage of Sclero because of what my capillaroscopy looked like and that I have gastroparesis on top of the GERD.When I questioned him that I didn't have any Sclero specific antibodies he said you didn't need sclero specific antibodies to be diagnosed with Sclero. From my research actually the only CTD that has a specific antibody required as part of it's criteria is MCTD. But of course who knows -- His final answer was -- It is what it is. My general practitioner is young and does not seem very bright but I am happy that he seems fine to let me research and is willing to send me to any specialists when I ask. My GI doctor did get frustrated with me when I asked for a repeat biopsy for Celiac and told her (very nicely of course) that she didn't take enough samples last time. I have a son with Celiac and wanted to be sure that wasn't playing into all my GI symptoms. But most of the time she is really good about checking for things I ask. She actually has been the biggest help with trying to figure out my chest pain. She was willing to check for pancreatitis and gallstones at my request even though she didn't think my symptoms matched and she's the one to refer me to a Cardiologist just to rule that out. My hematologist was actually fascinated for me to explain to him what a nailfold capillaroscopy was and we took half of my appoinment for me to teach him about it. I thought that was neat-- a doctor actually interested in what I had to inform him about! My rheumatologist has not done any PFT's, ECHO's or even referred me to a Opthamologist since I've begun Plaquenil. But I will be asking for those at my next visit (well the ECHO I won't need since I just had it last week). I do like my rheumatologist even though I don't think he is thorough enough; I need to reserve judgement though because I've still only seen him twice. I just think they are way too busy -- I always see the Nurse Practitioner but she always goes down and counsels with him and even has brought him in to see me with her when she was unsure. Then when he was unsure he sent me for second opinion at Cleveland Clinic, so I like that he's willing to say when he just doesn't know. Well I hope you find a rheumatologist that you can work with and that will order the right tests. We'll see how my rheumatologist responds when I ask about PFT's next visit. I hope you have a great day and nice meeting you!
  10. Thanks for all great welcome, I've been learning a lot just lurking around the site for the past 6 months and reading all the wonderful information you have on here! I really appreciate this site. Miocean, I have the same problem as Mando with my Primary Care. He was very willing to send me to specialists and willing to run tests that I ask for but he doesn't seem very bright or on the ball, I have to point out the test results that come out positive and I occasionally wonder whether he even reads all of my tests -- I also have had so many tests run so maybe I'm too complicated for him. But I don't mind too much, I just try to keep track of things myself. I learned about gathering up paperwork when I saw the rheumatologist at Cleveland Clinic - -I had to round up all my paperwork in less than a week -- boy was that difficult. I'm still a little slack in keeping everything but I know now I can ask for my results and I do try to do that much of the time. I just use my specialists for everything and don't even see much need in going to my primary it seems like a waste of time whenever I go there. I have always enjoyed research and health(although I never used to go to doctors I was a real natural remedies buff and hadn't gone to a doctor for years but none of my natural remedies were working and I finally had to break down and get some help) I went from never seeing a doctor to a whole big group of "ologists". I don't mind researching and keeping track of my own care. I'm strange in that I actually find it rather interesting and I don't tend to get too anxious --my faith keeps me at peace most of the time. The most difficult part is when you know something is wrong but you pass all the tests and no one can figure out what it is. I still have several symptoms like this chest pain that we just can't seem to pin down. Well, we'll see what the Cardiologist says next week. It is what it is! That's what the rheumatologist at Cleveland Clinic said his favorite phrase was when I tried to pin him down on what he thought about my case, he kept talking to me about Sclero instead of MCTD and I tried to pin him down-- if he thought that was where I was headed and his answer was-- It is what it is! Thanks again to everyone for the encouragement and all I've learned on here -- hope you have a pain free day, Climber
  11. I was diagnosed this summer with probable MCTD. I think the diagnosis code they gave it for insurance is UCTD. I don't think I have all of the criteria but I had a postive ANA, elevated sed rate, and positive RNP (4.6 where anything 1 or higher is positive) My rheumatologist sent me to Cleveland Clinic for a 2nd opinion. That rheumatologist did a nailfold capillarocopy and said mine had a scleroderma pattern.(which can also be found in MCTD). He said that MCTD is sometimes an early stage of Scleroderma. I have joint pain, reflux, gastroparesis, chronic gastritis, iron deficiency anemia, mild raynaud's and mild erythromelalgia. I started Plaquenil 2 weeks ago and I'm on iron, omeprazole and levothyroxine( for Hashimotos). For the last month or more I have been having chest pain. I also for the last 6 months have SOB, fatigue, and palpitations but I just discounted them as they could be from the anemia, thyroid or MCTD. But with the chest pain I decided to have things checked out. Off to the rheumatologist's nurse practitioner who poked around on my rib cage and didn't think it was inflammation-- the pain goes to my back and so she was thinking pancreatitis or esophagitis. Off the the GI doctor I went and she did pancreatic enzymes and a ultrasound and found nothing but gallstones-- but all my pain is on the left not the right so she sent me to a cardiologist. He did a quick ECG(normal), holter monitor (no results yet), chest xray(no results yet) and a stress echo. I had the stress echo yesterday. The original cardiologist whom I really liked is out on vacation this week so I saw another who I was not too impressed with-- he just didn't seem to competent or experienced, didn't seem to know much about MCTD. I had to ask him to check for Pulmonary Hypertension and so he looked at it quickly as we were going over things and said the RVSP was 36.98 and for Pulmonary Hypertension it had to be 40 or above. I said isn't that getting close -- His answer was that these things progress very slowly and he would have an ECHO maybe every 2 years. He did one after exercise which he said remained the same but I know he sounded disappointed that there was some reading on the right side the sonographer didn't get after the exercise. This team definitely did not seem to be experts on Pulmonary Hypertension or Connective Tissue Disease. I will hopefully get a phone call next week from the original Cardio with the end results of all the tests. Just wondering if something like this needs to be checked out by someone more experienced or is an ECHO the same no matter who does it or interprets it. I just wish I could figure out what all this chest pain was all about.Thanks for any insights you can share. I've been lurking for a while and learning a lot but this is my first post. I hope it is OK if I join even though I don't have pure scleroderma-- I could learn a lot from all of you. Thanks -- Climber
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