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About froggy

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    Pittsburgh, PA USA
  1. Hello again. Just wanted to follow up with you all about my visit with Dr. Medsger. I know that you all have great things to say about him, but I guess I just need to add my rave reviews as well. :) Perhaps someone will read this and it will give them the extra push to see him. His office called me four times to ask me questions about my records (prior to my visit), saying that Dr. Medsger was reviewing such and such and had this particular question. That, in and of itself, was so comforting. Until this visit, I had come to the point where I completely resented filling out all of those history packets and such. No one ever read them! I was at his office for over two hours, not waiting more than five minutes for anything. He spent a solid hour and a half with me! The "skinny" is: no scleroderma, but definitely Sjogren's. He was honest enough to say that he had no idea what the bumps and such are on my hands. I was encouraged for several reasons: 1) He is the first doctor to answer and explain why prednisone helps me so much. He explained that I obviously have inflammation around (or in?) my nerves, despite negative blood tests for inflammation. He based this conclusion on the fact that, upon his physical examination, he found that I have carpal tunnel in both wrists. This is inflammation, and it makes sense that the majority of my pain is from this kind of inflammation. Again, despite numerous nerve testing. He said that with Sjogren's and other diseases that can attack your nerves, it's very easy to get negative tests because you can biopsy or test nerves in the wrong place so easily. Makes so much sense! 2) He's writing letters to all of my doctors, and will tell them his findings, as well as his recommended treatment... Which happens to differ from theirs in that he thinks I need to be on prednisone! A low dose of that and then Plaquenil. He said that three months on that is not near enough, and he doesn't think I need to be on Methotrexate. 3) He told me that, if my doctors were unwilling to go with his recommendations, he would be happy to set me up with a Sjogren's specialist within his practice. Again, he was very forthright in telling me not to very discouraged about the low dose of prednisone not making me feel better. His estimation is nine to ten months on both the prednisone and plaquenil before I feel a change. But this is treatment, not a big bandage made of methotrexate and mega pain medicine!! This gives me hope that, contrary to my pain management doctor, I might not have to be in pain management for the rest of my life! This was another entirely too long post, but I needed to write it because I owe a HUGE thanks to you all! I never would have considered seeing Dr. Medsger if it wasn't for all of you! THANK YOU! THANK YOU! THANK YOU! Peace and blessings, ~ Andrea
  2. ***Craig,yes you're correct, methotrexate isn't "right" for Fibromyalgia. My symptoms, up until the past two months, were extreme pain, itching and burning. The only outward signs of any autoimmune disease(s) were my hands and feet turning bright blue/purple and the soles of my feet turning bright red. I did have dry eyes and mouth, but my first rheumatologist chalked it up to having had a full hysterectomy (surgical menopause). I would, however, have weird vasculitis type things happening. For instance, my hand would swell like a balloon, and turn all manner of colors, and by the time I would get a camera, it would be gone! An allergist told me that she thinks this was my body adjusting having had two blood transfusions after my hysterectomy (never mind that it was almost a year after the fact). She did try Plaquenil, but was unwilling to try methotrexate because it is such a strong drug to use, without a diagnoses , and negative labs, save for a slightly positive ANA. I finally left the first rheumatologist because she said that since all of my blood work was negative/normal, and I had no manifestations of disease, she thought that it was an extreme case of fibromyalgia (again, even though I "flunked" the Fibromyalgia test). I was in such agony, and the only thing that made me feel half way decent was a higher dose of prednisone. I went to see my primary care doctor who put me on the prednisone (because I begged and was in an complete emotional melt down) until I saw the new rheumatologist. By my second visit to the new rheumatologist, my parotid glands had begun swelling. He thought Sjogren's even before this. He was desperate to get me off of the prednisone, and felt that the methotrexate is much more benign of a drug than prednisone. Since the Plaquenil failed, he tried to wean me off of the prednisone before I began the methotrexate, and I couldn't get off. That's when he sent me to pain management. Pain management diagnosed Fibromyalgia immediately, despite my again failing the test (I don't have increased pain in ONE of the pressure points). He began me on Savella, and at that point I was on the methotrexate a few weeks. Fast forward to two months ago, and I began with the hives/rashes, vasculitis, I mentioned above. Parotid glands are always swollen (may have a procedure done soon, that irrigates the glands and it's supposed to work in 88% of the people). My rheumatologist is sending me for all manner of testing and everything comes back normal. I am off of the prednisone, and this seems to be the only thing they care about. In the mean time, I get new symptoms every day. I have not had any blood work done since January, save for liver function and the vitamin D deficiency. Liver function has to be done every two months on methotrexate. My pain management doctor wants me off of the methotrexate, and the rheumatologist wanted me off of the Savella. I am off of the Savella at this point. As you said, this visit should clear things up. ***Hey Chopper! Thank you! I'm going to see Dr. Medsger as well!! Are you from the area, or do you have to travel very far? I feel so blessed to live so close! I still can't believe he answered the phone!! How often does that happen? :) I will let you know all of the details after my visit. What day in September are you going? I hope we both have a positive experience! *** Question If a person is positive for scleroderma, are they born that way, or can it change? I wonder if I didn't show a positive, or slightly positive about 20 years ago when I had surgery on my hand. I won't get into the story, but the short of it is, the surgeon did blood work and said that I had Raynaud's and "Doesn't look like you have anything to worry about right now." He then gave me the business card of a rheumatologist here and said that if things got worse, to go see him. Now even the Raynaud's bloodwork (or what ever they use to test you for it) comes back normal. What's weird is that I had my first Raynaud's "attack" yesterday. I've always had purple and blue hands and feet, that would turn bright red after hitting hot water. So much so, that people would always ask me what was wrong with my hands! With that said, I never had a full on "attack", and quite frankly, I never understood why it was described that way, until yesterday. My hands and feet would always change colors and hurt, but it was always due to the temperature. I had some dental work done yesterday, and my finger tips slowly became numb in the chair. Next thing I knew, I was driving home with completely numb fingers and it was going into my hands. The hands were sheet white (that never happened before) and the tips looked "pruny" like I was in a bath for a long time. So I'm wondering, did I always have Raynaud's or just bad circulation, and now it's Raynaud's? I was able to nurse my first three children, but when the twins came ( a little over two years ago), I could only do it for a few months. The pain was excruciating. I google searched my symptoms and saw that Raynaud's could cause what was going on. It definitely was this condition. So why did this not happen for the first 3, unless something changed? I don't know, but the doctors are always confused when I tell them that I always had Raynaud's, because they say it is very rare for it to suddenly get worse when you've had it your entire life. Anyway, thanks for reading another one of my books! Peace and blessings, Andrea
  3. Thanks Craig. Yes, I'm finding that if I google search my symptoms, several different diseases could cause my symptoms. Initially, my searches on symptoms is what brought me here. Regarding the methotrexate, I'm on that because I could not get off of the prednisone. Because plaquenil is the most benign approach to autoimmune problems, my first rheumatologist prescribed it. When I went to the new rheumatologist, and my symptoms were beginning to appear (other than pain and Raynaud's), and because I could not get off of the prednisone, he decided that a more aggressive drug was warranted. At this point, I don't think it is working at all, but apparently it can take several months for it to kick in. I don't understand either, why all of my blood work is negative. Perhaps it has changed in the past six months? At any rate, I'm glad to have my appointment with the scleroderma specialist next Friday. Take care now, and thank you again, Andrea
  4. Hi again. I just want to again, thank everyone for your kind words, encouragement, and for the advice... and for remembering me! ;) Before I saw pain management today, I called the number you all have listed for the scleroderma specialist here in Pittsburgh. Guess what? He answered the call and said "Hello." I thought I had the wrong number so I apologized, repeated the number and asked him if it was the same. He told me that it was and then asked what I was looking for. Told him, and he said "Yeah, that's me, but this is my private office number." I about died, but I was happy to talk to him! I told him what was going on, that I was very happy with my rheumatolgist, and did not have any positive blood work,and basically, that I called him because you all told me I should! :) I asked him if he thought I should come and see him, and he said "Well, I think you have a lot of questions, and a visit here may ease your mind, if nothing else." So I have an appointment next Friday the 12th! Also went to pain management, and he told me that my back MRI (still no results to the head) showed that I have degenerative disc disease (guess not too many people over the age of 30 do not have some degeneration of the spine), but very significant disease, damage, and arthritis in my lower spine (Lumbar). This is what he had suspected, and the MRI confirmed his suspicions. That's all very interesting, however, that area, and hips (where I feel most of the lumbar pain radiating), is the least of my pain problems. I told him how bad I was feeling I think they (pain management doctors)can tell from looking at you, as to how much pain a person is in), and he is switching me to a new pain medication that will not be to my pharmacy until Friday. In his words (and he's Egyptian, so he has an awesome accent) "Now we're going to use what I call 'The Big Guns.'" He tells me that I will feel "really good" and he promises that. I'm hopeful. The last part is really cool because I told him again that "an acquaintance of mine" (A.K.A. Jeannie M. ;) )has fibromyalgia, and said that flexeril is the only thing that works for her. He immediately wrote a prescription for it!! So I took one as soon as I had the prescription filled, and I dare say it is has helped a good deal! I hope it is not psychosomatic, and I'll be crying in a couple of days, but (and again) I am hopeful. I will say it again, YOU GUYS ROCK! Although I'm in less pain, I am VERY sleepy, so I'm going to try and turn in early tonight. Thank you. Thank you. Thank you! Peace and blessings, ~Andrea
  5. Thank you! You guys ROCK! It's amazing how much your words have lifted my spirits! I'm going to call that doctor today (thank you Joelf). I will post again tonight after the pain doctor appointment. Hope you all have a great day!
  6. Hi Jeannie! Well, you sure know how to make a girl feel special! Thank you for the fast response and for asking (and remembering!) about school! Unfortunately, it took everything in me to finish out the year this last time, and I know I can't homeschool this year. This has been so upsetting in and of itself. The good news is that we have a good cyber school available, and the boys are stoked about it. Guess what? I live IN Pittsburgh! :) Do you think I should go, even though my blood work is negative and I haven't been diagnosed? If so, should I continue to see my current rheumatologist? I do like him very well, and he is extremely proactive in finding out what is going on with me. I also do see a pain management doctor, he's the one who has me on all the pain medication. Should I ask for that medication? :) I see him today, and I know he will deny me the prednisone again. Every time I beg him for it, he ups my pain medication! Thank you again Jeannie!
  7. Hi Everyone. It's been so long since I posted last. Don't know if anyone remembers me. I've been so sick, and haven't had the energy to post anything. Since I posted last, I changed rheumatoligists, and almost immediately began showing symptoms of Sjogren's Syndrome. My parotid glands are always swollen, dry mouth, sores, dry eyes, unexplained rashes... the works. I was sent to pain management, and despite my begging for prednisone (the only thing that helps me to function), the doctor will only prescribe me more REALLY strong pain medication. I'm on methotrexate as well, and I do think that has helped a bit. Prior to any physical manifestations of disease (other than pain, and Raynaud's symptoms), all of my labs were normal (and as of January, they still were, other than low vitamin D). My new Rheumatolgist thinks that the excruciating, all over pain, is due to the Sjogren's. I also have bright red burning feet, that he thinks is from this as well. Basically he thinks all of my symptoms are due to Sjogren's. He also , at one point, looked at my nail folds and said that they were "borderline" for sclerodermna, but did/does not think that I have it. I'm also having a lot of numbing and I'm losing control of my tongue when I speak. My rheumatolgist thought that this was from the swelling, but 3 Ear Nose and Throat doctors said that it is not. I had an MRI of my head last week, for which I'm still waiting for the results. I wonder if the technician did not see something, as she asked me (after she pulled me out of the MRI machine) what it was that I was diagnosed with, and what it did to a person. Maybe just making small talk? Does anyone know if they get back to you faster if they see something? Question here: So during one of my rash breakouts, I took pictures of all of the rashes. I had red patches that were not raised. Then what looked to be a prickly heat, or a drug reaction, all over my body, and one large pustule on my forefinger. I saw my rheumatolgist a week after this happened, showed him photos, and he said that it was vasculitis (the pustule on my finger, not the other stuff). It has been about a month and half since then, and my fingers are covered in hard, painful lumps. They burn and itch sometimes as well. When they burn, they burn like crazy. They usually start off red (but not always, sometimes it's just painful there, and a lump appears). The first pustule I got is still there, but is a colorless lump that is not painful. Both of my forefingers are the worst, and the skin is much darker on those fingers. The skin peels continually and is very hard and calloused. It's becoming increasingly more difficult to maneuver those forefingers... It feels like they are slowly dying, and that's the only way I can describe it. Does this sound familiar to anyone? I've read about calcinosis, but the only white I think I'm seeing, is the dead skin. It does become chalky, but I've never squeezed any of these and had anything come out. I'm sorry this is so long (always is!). I'm just so desperate to find out what is going on with me. I seriously feel as though I'm dying, and that they will not find out what is wrong with me until the autopsy. My pain management doctor is also treating me for fibromylagia, and insists that this is just a really severe case of it. He insists that the increasing pain, is part of it. That I will live with this pain (barring a miracle) for the rest of my life. I could accept that if I weren't deteriorating. Last year at this time, 1/100 of the pain medicine I'm on right now, would have made me functional... I'm just looking for someone to say "Oh, the SAME thing happened to me, and here's what..." Thank you for reading this! Peace and blessings to you all. ~Andrea
  8. Hi Summer. Well, I haven't been officially diagnosed with either. My rheumatologist did give me a fibro diagnoses on paper, along with connective tissue disease, but she's still not certain it's fibro because the symptoms would be atypical in that I had increased pain in only 2 of the 15 pressure points. With all of that said, besides my Raynaud's going into overdrive, my first real indication that something was very wrong, was the pain you're describing in your feet. We live on 3 acres of property that we have to mow the majority of because it's on uneven hills (tractor rips it up). At first I thought that the pain was from doing so much mowing. After I had left the mowing all to my husband, I realized that it had to be something else. The pain would, and still does, keep me up at night. All of my blood tests have been negative, so I do not know what is going on. I can, however, sympathize with you. Hot baths are the answer for me... for just about everything. Because you do have a diagnoses of both sclero and fibro, it would probably be wise to follow Shelly's advice, and see a doctor. I do hope you are feeling better soon. Peace and blessings to you, ~Andrea
  9. Thank you all for your posts. I do feel a good deal better today. It certainly seems to come in waves. Amanda, No the doctor did not say the pain is from sclero, because I don't even have a diagnoses of scleroderma. I had a bunch of blood-work that came back negative so she gave me a diagnoses of connective tissue disease and possible fibromyalgia. I do not have pain in the tell-tale pressure points for fibromyalgia. The intense pain began several months ago, after a bad stomach bug. I had begun with joint pain before that. Weird things like my feet would just ache and hurt intensely for no reason. After the bug, the joint pain almost never goes away and is in all my joints. I feel now, as well, that I have a flu all of the time. I hurt/ache from head to toe. My Raynaud's went into overdrive after that virus as well. I'm concerned about my doctor's feelings because I don't want her to think I'm a lost cause and give up. "Everything I try for this girl does not work. When I want to try antidepressants, she won't take them... what can I do for her?" She never called me back yesterday, is she mad because I didn't take the antidepressants? These are the things I think about. Thank you for responding to me Amanda. 'Ride, I don't know, could be the medication. I've been trying out new medication these past few weeks. The one that I've been steadily on is Plaquenil. I was thinking pneumonia, but I did just have an x-ray about a month ago and everything was clear. Perhaps the antibiotics they gave me for the bronchitis did not work as well? I don't know. Thank you for that, it's definitely something to keep in mind. Miocean, did you just keep telling your doctor about your troubles and she/he did a test? I told my rheumatologist about it and she didn't seem to think it was a big deal. Thank you for that information. Judyt. Amatriptyline is what she prescribed! She said just what you said as well: "It's just a good old fashioned drug that works well for a lot of people." The only reason I'm afraid of it is that I have been prescribed anti-depressants in the past, and have not done well on them at all. In fact, almost everyone in my family has been prescribed them at one point in their life, and have not done well on them. I feel suicidal on them, and it doesn't take much medication to get me there. The other thing is that she wants me to stop the pain medication in the afternoon so that I won't be taking it with the amatriptyline. This scares me because I tried not taking it the other night, and that's when I ended up in excruciating pain. Perhaps she will call me back on Monday and I can tell her my concern with that? Maybe that's a sign for me to take it. Out of all the medications out there (antidepressants), you mentioned the one that she prescribed! Thanks Judy. Thanks again to all of you for baring with me! Peace and blessings to you. ~Andrea
  10. Hi Everyone. A few weeks ago my rheumatologist put me on Plaquenil, told me to continue the pain medication I was on, but she wanted me to cut down on some because she was worried about my stomach and liver. The problem is that what I was taking never took away my pain anyway, just made it tolerable. So over the past few weeks I stayed about the same with symptoms. Over this past weekend, I felt better than I have in several months. I was using half of the pain medicine I would normally take, and it was taking care of the pain. Then on Tuesday afternoon it was like I ran into a brick wall. I was feeling great, then an hour later, I couldn't pry myself off of the couch. Just squirming in pain. I finally called the Ruematologist yesterday and she said that she wanted me to begin a low dose of an antidepressant at night to sleep, and that this should help with the pain. She also said that she did not want me to take any pain medicine after noon, as she did not want me on it when taking the anti depressant. So here I am, in horrible horrible pain, and she tells me to cut down on the pain medicine (that isn't working well in large doses) and to go on an antidepressant. I told her that antidepressants make me depressed, her response was "Really?", as if this was a really strange reaction. Is it? I don't know!! I don't want my rheumatologist to rue the day she met me. I also need some answers and relief. What do I do? I called her office today and the nurse who answered the phone said that if I'm in that much pain the Doctor will most likely tell me to go to emergency, but that she would give her the message. What should I do? If I go to emergency they'll put a band aid on the pain, and I'll feel like I do now, tomorrow. Are there things I can ask them to test for? Am I being an intolerable patient? I thought I had bronchitis a few weeks ago (was treated for it). They did an x-ray and said my lungs are clear. I still cough every morning and have a hard time catching my breath. My chest hurts all of the time. Could there be something with that? I just wish they could find something that would give them the heart to know that I'm in bad shape, you know? Thanks for reading this. Peace and blessings, ~Andrea
  11. I have intense, maddening itching. I have read several posts on here, and elsewhere, and it would appear that very few rheumatologists even acknowledge that this is a problem that they're aware of. I was tested last year, about 2 months after having the twins, for liver function. It was the OBGYN specialist who ordered the test. He said that there's a condition involving the liver that women can get after childbirth. When that test came back clean, everyone else just said to take Benadryl. Like you 'Ride, my rheumatologist is very nice (I do love her), but when I mentioned the burning and itching she had the same reaction as your doctor. (I am so psychosomatic driven... I'm itching like mad while talking about this! =) ). At any rate, I do get more information here, than "out there" among the professionals. Craig, that is very funny, and so spot on! Peace and blessings, ~ Andrea
  12. I don't know where I heard this (sometimes I wonder if I dream this stuff and think that it's reality... scary huh?) Anyway, regardless of where it came from, it really does hold true. They say that if you keep your ankles and wrists warm, your feet and hands will stay warm. I guess it's as if the source is what matters? At any rate, for me, the Raynaud's did not get severe until last year, and even then, it was not near as bad as it's been these past several months. Point being, what I did to keep my hands and feet warm last winter, worked really well, but I do not know if the same techniques will work again this year being that the Raynaud's is the worst it's ever been. All of that said, the weather here in Grey Pittsburgh, PA has been damp and very cold as of late. If I make certain that my wrists and ankles are kept extra warm, I can maintain heat in my hands for the majority of the day (I do wear gloves, but not battery operated or heated in any way.) I just make sure that I have thick socks on that go way past my ankles, and sweaters, or thick cotton shirts/hoodies that go past my wrists and rest on my hands. I've thought about buying those cheesy '80's terry cloth wrist bands... bet they'd work like a charm.=) I still have no idea what to do for my poor nose... Hope that helps. Peace blessings, ~Andrea
  13. I got choked up reading your story. Thank you for sharing, and kudos to you girl! So good to read of the progress! And You're right,it's something I need to constantly be reminded of, "Consider it all joy when you fall into various trials..." Peace and many blessings to you, The Other Andrea =)
  14. She indeed sounds nuts... like squirrels are surrounding her, nuts... I think that they HATE when we get our own information because they're made to keep on their toes. Before the internet we were stuck getting information from libraries. By the time we would read things, technology had changed. I like Shelley's good, yet entertaining advice. I would also print out your findings and highlight the sources. My mother did this, and after a year of suffering, both her primary care doctor and her rheumatologist had to admit that she was right and they began treating her with the proper medication. Sorry you're stuck, my heart goes out to you. Keep us posted. Peace and blessings, ~Andrea
  15. Hi, I'm sorry about your back. I have back problems as well and I know how having back pain can dominate every aspect of your life. Hope you're feeling better soon. I did not see the name of the machine. I'm not the brightest bulb in the box, so I'm certain I'm missing it, but I've re-read your post a couple of times and can't find the name. What kind of machine is it? Peace and blessings, ~Andrea
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