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About lotokids9

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    Bronze Member

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  • Location
    Riverton, Utah
  1. Wow, that is quite the experience. I am so glad to hear you are doing better.
  2. Eh, I am not worried there is something really wrong, I agree if it is that big of deal that they will not wait to let me know a treatment plan. I just still am not a good waiter. :-)
  3. So yesterday I had a lung function test done. After we had done the albuterol inhaler part and went back to testing the technician said that the results after would be considered a significant change. My rheumatologist is out of town for a week so I have no idea really what it means and what they are going to do about it. Any info all yall have on this is more than welcome. Thanks
  4. At least a refund when you go to the next doctor and what they seem to tell you is completely oposite. Humm, how does that happen. One doctor, yes you have a mildly (he likes that term, as if just because it is mildly high it is not causing pain) RF, Sed rate and C-reactive protine levels. Keep doing what you begged for and I will see you in a month. VRS You HAVE RA, Sclero I want to run a few more tests on because your not straight forward case, you had a neg. test four months ago but are showing postive now, lets run another and look at things but since you are having chest pain and shortness of breath lets do a high contrast CT and do an Echo because I hear a significant heart murmur. Lets do some more labs and get a baseline on your X-rays and get you started on Metho. Lets see you in a month. We will get you feeling human again. ARRRR, I saw the first one Friday and the second one Monday not like a lot had changed in a couple of days!
  5. Judy, Sorry to hear that you can't eat anything unless it taste like paper, that would certainly be the pits.
  6. I just had more blood work done and the doctor I am now going to is part of an online thing where I can see my results as soon as she can however this time the labs do not have the normal vaules range listed so I am still waiting because I can't seem to find anything that can tell me what I am looking at so I thought I would post them here and see if any of you can help me.... Lupus Anticoagulant Panel R DRVVT Confirmatory Test R NOT APPL aPTT 37 Hexagonal Phospholipid Neut NOT APPL DRVV Corrected NOT APPL TT NOT APPL Reptilase Time (Patient) NOT APPL PTT-Heparin Neutralized NOT APPL Interpretation: SEE NOTE PTT, 1:1 Mix Unincubated NOT APPL DRVV Patient 38 Platelet Neutralization NOT APPL PT 13.4 (there was no note attached, some had numbers other said not appl. ??) Cyclic Citrul Peptide Ab, IgG 2 B2Glycoprotein I, IgA Ab Options 8 Scleroderma Ab 323 This lab does not write an H for high next to them they typically just give the normal value range and so you can tell. Really wanting to know what all this means and trying to figure it out on my own. I am sure the doctor will call me soon. This is what is says for the results of my Echo... Summary 1. Mild tricuspid regurgitation. By Doppler estimation, no pulmonary hypertension; further, RV size and function are normal. 2. Left ventricular systolic function is normal. 3. There is mild left ventricular hypertrophy. 4. Impaired relaxation pattern of LV diastolic filling. 5. The right atrium is mildly dilated. Normal-appearing IVC suggests lack of central venous hypertension. 6. Mild pulmonic valve regurgitation. My CT looked great CT chest angiogram: CT chest angiography was performed with the administration of 150 mL Isovue-300. There is no evidence of pulmonary embolus. The pulmonary arterial tree appears normal. Lungs are clear without evidence of acute or chronic disease. No obvious hilar, mediastinal or pleural abnormality. Radiologic diagnosis: 1. Normal chest CT angiogram.
  7. My doctor did talk to me about the injectables because she is worried with the constant diarrhea I have been having that I will not absorb the medication so she said we may switch to them for that reason also.
  8. So Friday I went to see the rheumatologist I don't like. The one that told me it was just a virus and to take the celebrex and go to my primary care doctor, he didn't need to see me anymore because I dont' have anything rheumatic going on. I had made an appointment with a new rheumatologist but we were still two months away from that appointment so I decided since I am having more symptoms and additional blood work that I would go see what he had to say again. So my latest symptoms are shortness of breath, pain in chest and back, diarrhea, continued joint pain even though on the Celebrex 2’s a day for months and months now. My blood work... 3/4/2008 ESR 22 H Rheumatoid Factor 20 H ANA Choice Positive H 4/7/2008 Sed Rate 25 H Rheumatoid Factor 19.1 H Antistreptolysis 349.6 H Parvovirus 4.8 H 8/7/2008 ESR 32 H Rheumatoid Factor 20 H ANA Choice Positive H SCL-70 AB 3.3 H SCL-70 antibody is strongly associated with scleroderma. The doctor told me you don’t need to be on anything else because your joints are not swollen and that is the only time you need to worry about the disease progressing is when they are swollen. Then I asked him, isn’t there anything we can do, I feel horrible if I do ANYTHING. The doctor said, well we can try some Plaquenil. Take one two times a day and I will see you in a month. He ran a few more blood tests and sent me on my way. On my drive home I got a call from the other rheumatologist’s office saying they could get me in Monday, it was currently Friday. So I waited all weekend hoping this new doctor would be what I need. Yesterday I went to see the new rheumatologist. She was fabulous! I am just so thrilled to finally have someone that seemed to do something and listen. She examined me and went over the blood work. She said based on your exam and swelling in your joints you certainly have Rheumatoid Arthritis. You might easily have Fibromyalgia also, that often comes with all of this but I am just thinking out loud on this I am not ready to write it down as a diagnosis yet. With the Scleroderma you have some symptoms but not others so I would like to wait on that one also. Let’s do some more blood work and do a CT to look at your lungs I am worried about your shortness of breath. What have doctors said about your murmur? I said, murmur what murmur? She said nobody has ever said you have a murmur. I said no, she said you have a pretty significant one, lets to an echo. X-ray of your hands and feet and get you started on methotrexate and I will see you in a month and we will see how your are doing. So I am planning the Methotrexate for Saturday night to give me Sunday if I feel yucky. That is the only day I can give. So I am starting out for the first two weeks on 4 pills and then after that go to 6. So I started my folic acid yesterday. I have my CT and Echo today! I am just so thrilled to find a good rheumatologist. What a drastic difference between the two rheumatologists. So anyone in Utah, I have a great doctor if you’re not happy with the one you’ve got. She is worth the wait!
  9. Thank you! I am going to call the rheumatologist office tomorrow and tell them I want to be prepared, these are the symptoms I am having what test can I have my primary order so I am not just sitting around waiting. We had our first 5 in 5 years, actually having 7 pregnancies in 5 years ON birthcontrol. I go into labor at 24 weeks, we had 2 preemies and a failure to thrive so after that we decided to call it quits on our own and did foster care for about 4 years before adopting a sibling group. We got our girls when they were 2, 1 and 6 months and our son was born during the process. Laura
  10. Ugg sorry to hear about the congestive heart failure. My primary doctor is being reluctant to order a puminary function test. I about lost it with the nurse on the phone today. I just said after researching and posting on boards of people with Sclero I feel I need to get a PFT done now so I am prepared going into the rheumatologist. I don't want to wait until the end of November for this appointment only to have to wait around longer for more test before getting some answers. She hemed and hawed and then said she would talk to the doctor again. We will see. I expect him to call me tonight, usaully after 5 when he done with patients. With how upset I was it wouldn't surprise me. Then I can ask him if he has heard from the rheumatologist or how that went yesterday. My legs do not appear to be swollen to me so that is good.
  11. My primary was going to call today, he was not happy that I hadn't been seen yet. The problems is all of the Rheumatolgist here are out that far, I did try calling around plus they won't talk to you unless your doctor's office calls in. Very frustrating. I plan to call every day and say, I this is Laura I am just seeing if you have any cancelations today. I figure then when they finally do get one they will think of me first.
  12. I haven't had any problems swolling yet but this trouble breathing seemed to come on all the sudden. It use to just be at night and now it is all the time. The acid reflux is all the time no matter what I eat etc. Able to swollow though fine.
  13. I was on a 60mg taper and then on a maintance dose of 10mg. I felt that I was doing better on the Celebrex. He does have me on both for a few days just because he doesn't want to take away the pred without any celebrex built up in my systom so I know your not suppose to be on both at the same time but I think it is worth it because the thought of going off pred before starting the celebrex just insn't working for me.
  14. Hi, My name is Laura. I have many many questions. My doctor has spoken with my new rheumatologist (which I haven't seen yet) and told her what my bloodwork said... LATEST BLOODWORK - Showing Scleroderma ANA Postive SCL-70 AB positive (Cascade interspretive comment: SCL-70 antibody is strongly associated with scleroderma.) Rheumatoid factor 20 H ESR 32 H My sed rate and RF have been continually high for months now. I have been on Celebrex 2x's a day 3/28/2008 to 7/18/2008 then I stopped it because my first rheumatologist said that this was just a virus. Well after so many months on it I didn't feel like this was a virus and decided if it was that I could stop the celebrex and be ok. Well after a few days of being off the celebrex I was dying. So much pain so I started taking it again but made an appointment with my doctor who decided to put me back on prednisone to try and get this under control and he decided since I had had a positive ANA in the past to look at that closer and see what is going on since my first Rheumatologist seemed to dismiss me. So that is when this bloodwork came back and I found another rheumatologist to go to and my doctor talked to her and she said not to put me on a high dose of pred because with sclero patient you have to be concerned with the kidneys. Well after being on pred for like six weeks now I am in a lot of pain still and still waiting to get into the rheumatologist who is trying to get me in sooner than the November 25th date I am scheduled for but is taking forever. So I went back to my family doctor today and he is going to get me off the pred and put me back on the celebrex 2x's a day in hopes of reliving some of this. The only thing that seems to take away my pain is if I take flexeril and a heavier drug together then it makes me tired enough to sleep. My doctor is worried about me being on the heavier drug though. 7/28/2008 - I started having a hard time breathing when I went to bed, I have to be boosted up with pillows. The last couple of weeks it feels like no matter what I am doing it is difficult to breath. I can't walk from my car to the store without feeling winded. I also started with acid reflux that I have never had before other then when pregnant. That is very uncomfortable. So as I wait to get into this rheumatologist, any suggestions? Any tests I should be having done before seeing the rheumatologist? Any advise? Thanks
  15. Hey everyone. I am a 34 year old woman, wife and mother to 9 children. In February I started having popping in my joints that then went to pain in my elbows and every other joint in my body. I got so bad that I was bed ridden. They put me on 200mg Celebrex one time a day and that did nothing. They then put me on a two week prednisone tapper and that helped a lot. After that I was not a 100% again but I could function decently. They put me on 200mg Celebrex 2x's a day and we waited for the blood work. These were my results... My sed rate was 25 HIGH Rheumatoid Factor 19.1 HIGH antistreptolysin o Ab 349.36 HIGH Parvovirus B19, IgG 4.8 HIGH He ran an ANA+ENA+DNA/DS+Anti-H+Centr... that was negative this time 35 where last time I had blood work done I had an ANA Choice that came back positive, however ANA by IFA reflex was negative. So the Rhuematolgoist decided it was a strep infection and sent me on my way. I really felt it was Rheumatoid Arthritis. The doctor seemed to feel if it didn't have softball swelling with red and hot then it was not that. So I continued on my Celebrex 2x's a day and got feeling about 85% better. Still couldn't exercise because that would start me hurting even low level walking. I decided if this is RA I need to be on some stronger meds to stop the progression, if it is just a virus it should be gone by now. (July) So I stopped taking the second celebrex and after four days I was in a ton of pain. My husband said get back on the med. you don't want to be bed ridden again. No I did not so back to two times a day Celebrex I went and after a week and a half I was still feeling lousy so I made an appointment with my family doctor. Told him ok, what is up I do not buy that this is an infection. He said, no I don't either and he did more labs and put me on another pred. tapper. Blood work came back this time saying... ESR 32 high Rheumatoid Factor 20 high BUN/CREATNINE RATIO 34.4 high ANA CHOICE positive ANA CHOICE CASCADE SCL-70 AB 3.3 high Cascade interpretive comment SCL-70 antibody is strongly associated with scleroderma. Very rarely, it may be seen in other connective tissue disease. A positive result at this stage of testing stops further testing, ad does not prelude additional positive antibodies. Clinical correlation is required to assess the need for testing additional analytes. Ok, why not just do the whole cascade vrs. stopping just because of a high marker. Wouldn't it be good to know if other things are high? So I am currently waiting to get in to another Rheumatologist. Not going back to that other one but the doctor's are playing phone tag. I am on the second half of my pred. tapper and finally feeling pretty decent. My main complaint is joint pain however the last two weeks I have had tightness in my chest especially when laying down. Feels like I can't breath but I am not turning blue or anything. I feel horrible, just like I am starting to get the flu. Low grade fever. Any advise, comments or suggestions would be greatly appreciated. FYI: Also on Cytomel and levothyroxine for my Hashimoto's Thyroiditis. Thanks, lotokids
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