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Tammy

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Posts posted by Tammy


  1. I was just wondering how you guys deal with having to take time away from work. The company that I work for requires that we have a leave of abscence (long term or intermittent). I have been using the intermittent leave (stomach/bowel involvement makes it necessary) but they require that it be renewed every 3 months and the doctor charges $100 dollars for the first page and $75 for every page thereafter, it gets really expensive (3 pages for our packet)! I have tried explaing to our corporate HR that this is something that is not curable at this time (hopefully that will change soon!!!) and cost just for paperwork is outrageous and of course insurance covers none of that expense. Have any of you ran into this problem and do you guys know if this the mandated routine for a leave of absence or just the company that I work for?

     

    ANY advice is greatly appreciated!


  2. WOW, it is so wonderful to see so many people still here that had given me so much wonderful advice in the past. You guys truely are a family, here for the long haul and still giving great advice, tips, and support!!!

     

    I finally got the defenitive diagnosis: Limited systemic, about a year later, 2 ganglion blocks,and 7 or 8 doctors later! OH MY!! I have a new rheumatologist now so hopefully things will start to improve.

     

    I just wanted to tell all of you that have been here so long helping, caring, loving, that you are rare and your compassion for your fellow brothers and sisters is a true testament to the statement: "Not all of humankind has forsaken humanity". THANK YOU!!!!! :thank-you:


  3. I was wondering if there is a way of telling when this disease started in individuals. My Raynaud's started when I was about 13 or 14 or so would that be considered onset? Also, and I know that everyone's disease progresses differently, is there "common" progression rate? I was wondering because my ana pattern indicated limited systemic and it progresses more slowly but I am experiencing late stage symptoms (loss of bowel and bladder function... UGH!). My primary care physician just put me on steroid suppositories twice a day for 14 days and wants another colonoscopy done.


  4. Good day all! It has been a while since I last posted but things have gotten quite hectic around here. This is going to be rather lengthy and I apologize but I really need some advice and counsel here!

    I had my first endocrinologist visit about a month ago (I had a pituitary removed in 1990 and have some damage to the gland), the good news is that most of my hormones are at a good level, all but the growth hormone and cortisol. An ACTH stimulation was done for the cortisol and that came back normal so we discussed what to do about the growth. He said that there haven't been many adult studies done to show if an adult taking growth hormone is worth the cost and time, we decided to forego the growth stimulation test based on that. I have been doing some research on the web about this and have found that in an adult low GH can lead to decreased lean muscle mass, muscle aches, muscle excertion, increased cardiovascular problems, decreased stamina, fatigue, osteoprosis and an overall low quality of life. I made him aware of the limited systemic sclerosis and even gave him a copy of the labs. He said that while he found them "interesting" he didn't think that it was anything that an endo would be concerned with. Now that I have found out some of these symptoms of low GH (sounds like some of the symptoms of scleroderma as well) I am begining to wonder if there is more to this low GH than previously thought. So now my problem is this: if he isn't concerned about it, do I need to bring this to my rheumatologist's attention and if so, what can she do about it (it's not her field)? She has already sent a letter to my primary care physician wanting a referal to send me to a pulmonary specialist. She also wants me to go see a dermatologist, that I have already done and go back in April. I feel like I am running in circles and not getting a thing done!! Does anyone have ANY suggestions or advice, I am ready to just throw my hands up and say forget it!!

    One last stupid question, is it possible to miss diagnose calcium deposits as boils if a culture is not done?

    Thanks All

    Tammy


  5. My mother used to make the BEST applesauce bread ever! She got the recipe out of a Better Homes & Gardens magazine about 25 years ago. She lost the recipe about 7 or 8 years ago and can't remember how to make it. All I really know about it is that the bread was braided and had a glaze on the top. Anyone happen to have a recipe like that?

     

    Thanks


  6. Crawler,

     

    I have tried Wellbutrin in the past, not for this reason though. I can not take it, I laugh UNCONTROLABLY! If I started laughing about anything I could not stop, sometimes it seemed liked it would take forever for it to stop. I would be crying and laughing at the same time, pretty messed up huh!!


  7. I wanted to wait a while before I posted another reply to this topic because I have started a B-complex injection and wanted to give it a bit to see if it helped. I have been using 2cc IM weekly for just over a month now and am still taking an oral B50 complex daily...I am still exhausted!! How often do you guys use the injection?

     

     

    Thanks & Hugs

    Tammy


  8. I was just wondering for those of you with a centromere ana pattern, have any of you had problems with tumors? If I am reading correctly (probably not though), the centromere is part of a chromosome which would mean that it has to do with cell division, right? If tumors are caused by improper cell division and death of cells, is it possible that tumors could be related to this? If so, and this is a "chicken or the egg question", would it be tumors causing the positive ana or the ana causing the tumors? :huh: I was just wondering!

     

    Tammy


  9. I talked to my dr this am, looks like another colonoscopy. I really feel that it is possible that it is the meds, I have a very sensitive stomach. I had been having some pain in the lower left abdominal area that lasted for about a month or so but has gone away in the last several days, I really assumed that it was the tumor on my fallopian tube causing the pain. Guess we'll find out. I am so physically and emotionally DRAINED...thanks for the hugs!!!

     

     

    Tammy


  10. Ya know, I had promised myself that the next time I posted it was going to be something good, not another complaint but I've had quite a scare this morning. I ocassionally have blood in my stool, had a colonoscopy earlier this year,revealed nothing more than chronic gastritis. For the last few days I have been getting sick to my stomach when I take my meds and last night I had some blood in my stool again. I got up this morning nauseated and am passing blood CLOTS! Do any of you experience this? I am going to call my dr first thing I am just a bit concerned and need some words of encouragement!!

     

    Thank you all for all of the support you have given to me!!

     

    Hugs ,Tammy,


  11. WOW, what a big issue this seems to be! I really appreciate the good tips and advice. It is interesting to see what has helped and worked for some and done absolutely nothing for others. I talked to my pharmacist today about the absorbtion of the oral B-complex as opposed to the injection form, I know that the injection will provide better absorbtion and be more effective so I think that I my try that. I can handle a couple of days of being sore better than I can the constant fatigue!

     

    In reply to some of the posts: Time off of work would be wonderful and my employer does provide FMLA, in fact I already have an intermintent leave but it has nothing to do with this, a whole different dr. and issue there. My job is very stressful, I am the lead pharmacy tech and my boss can barely make it through lunch without me there (lol). If I take much more time off he will probably flip his lid!! The financial impact would cause even more stress at the present time. We are already starting to fall behind just from days off for dr visits and such and there are a lot more to come. As wonderful as it would be, it is just not possible at this time.

     

    I am taking several medications now: Papavarine, propranolol, norvasc, omeprazole, furosemide, neurontin, B50, and some prn meds, all but the vitamin and albuterol cause drowsiness (yeah!). If the injection doesn't seem to help I will ask about palquenil.

     

    My eating habits are terrible, have been for years, and I know that can cause some of this problem as well. I never eat breakfast and very seldom eat lunch, my stomach problems make it difficult to do so. Lately even dinner is hit and miss, working all day and especially the increased ankle swelling takes it's toll, I am on my feet from 9 am to 6 pm with an hour lunch, by the time I get off I just want to come home, put my feet up and rest. Cereal has been the dinner choice as of late or just skipping it entirely.

     

    I am really hoping that the endocrinologist will be able to help with this, it is becoming depressing and I am becoming a hermit. :(

     

    Again, thanks for all the replies!!

     

    Rest and Hugs to you all!! ~~Tammy~~


  12. I have been fighting fatigue for several months now, lately it has gotten very bad! It is all that I can do to drag myself out of bed for work in the mornings and the weekends I sleep until 11 or 12 and have to force myself to get up! I changed my primary care physician last week, I decided that I needed a dr that was going to be able to help me keep all this stuff together and in perspective (I also have that much needed appt. with the endocrinologist thanks to the new dr.). I asked her about the constant tiredness, she wants me to ask the endo doctor about it but she suggested that I take a B complex vitamin in the meantime. I have been taking it for just over a week now but haven't noticed a difference, maybe I just haven't given it enough time yet but I am so exhausted all the time that I am growing desperate. What have any of you tried and what works for you? I would really appreciate any advice!!!

     

    Thanks ~~Tammy~~


  13. Thanks for the replies!! That takes a load off!!

     

    Ced~~ My problem sounds just like yours...I started using some clotrimazole cream today!!

     

    That brings me to another question... I read that an infection can cause the ANA test to be positive. Since this has been going on for a few months, is it possible that this caused mine to be positive?

     

    Big thanks and hugs to you all!!! ,Tammy,


  14. I have noticed for the last few months when I get out of the shower that I have these bright red patches of skin, mostly on my trunk and arms. After my skin has cooled back down they are just circular patches of dry skin. I was just wondering if any of you have this problem and if it could be sclero related and something that I need to bring up to the rheumatologist.

     

    Thanks

     

    Tammy


  15. Jensue, I am just like you...hate the cold!! Felodipine is generic for Plendil, my rheumatologist started me on amlodipine (Norvasc) on the 4th of this month she added papavarine on the 14th, I have not yet noticed a difference. I am taking 5mg of amlodipine a day and 300mg of papavarine. I stay cold almost all of the time, I even wear my jacket while I work (sometimes my gloves too!). My rheumatologist also told me to wear a hat (like a ski cap, something that fits tight on your head) because that is where you loose most of your body heat. If you're not wearing a hat try that, see if that helps you some. I have to wear mine when the temp hits 70 or below. At first I felt stupid, people would ask me if I was expecting snow but now I really don't care, they have no clue the pain and damage Raynauds can cause.

     

    Warm wishes ,Tammy,


  16. elena,

     

    I too have Raynauds, a pretty severe case. It started when I was about 13 or 14 so I have had it for about 20 or so years. At first it was just one finger, we really never thought anything of it. As time has gone by it now affects all of my fingers and toes and my lips as well. I had a dr put me on nifedipine but it caused swelling, he never tried anything after that. I just recently started seeing a rheumotologist she has put me on another calcium channel blocker (best med for Raynauds) and Papavarine. She also did an ANA test that came back positive. The best thing that you can do for your Raynauds is keep your body temp up! Wear a good pair of gloves and socks and most importantly...WEAR A HAT, that is where you loose most of your body heat! My rheumatologist has me wear them anytime the temp is at or below 70 degrees.

     

    Raynauds can be a primary condition and does not necessarily mean that there is an underlying disease or condition. My advice to you would be to get to a rheumatologist as soon as possible to try to get control of the Raynauds and go from there. Rheumotologists are the most qualified to deal with these things, they know how and where to start to help you!!

     

    Hugs to you!! ,Tammy,

    p.s. Wear a hat!!! I can't stress that enough!!


  17. I was wondering if you guys could help me understand my lab results a bit better. I got a copy in the mail from my rheumatologist and I don't quite understand it.

     

    The Ana result: 1:2560-1:10240

    Pattern: Centromere

    dsDNA autoantibodies: not detected

    nRNP/Sm IgG autoantibodies: not detected

    Sm IgG autoantibodies: not detected

    SS-A: negative

    SS-B: negative

    Scl-70: negative

    Ribosomal P Protein: negative

    Thyroid Peroxidase: normal

    C3 Complement: normal

    C4 Complement: normal

    Rheumatoid Factor: normal

     

    If everything is normal, what ana am I producing and what does it mean?

     

    Thanks ~~Tammy


  18. Hi everyone

     

    I had my follow up with the rheumatologist today, seems as though the Raynuads isn't primary after all, the ANA test was positive. I sure wasn't expecting that! :huh: I was so shocked that I forgot to ask for a copy of the lab, I am going to call tomorrow and see if I can get a copy. She added another medication, I can't recall the name, it's to help with Raynauds along with the Norvasc and she is putting me on Prilosec twice a day for the gastritis. She said not to worry (trying not to!!), the levels aren't outrageous but we are going to monitor it more closely. I go back in February for another ANA test.

     

    I was just wondering, how often is the ANA usually checked? How does this/can this affect trying to concieve?

     

    Warm wishes to all

    Tammy


  19. Hi all, I was just wondering how long it usually takes to get these test results back. The rheumatologist called me earlier this week to give me the x-ray results of my hips, normal, so the pain is being caused by the osteoarthritis. Still haven't heard anything on the ana test so I was just wondering (impatient me!!). ;)

     

    Thanks

    Tammy


  20. Just wanted to let you all know how the rheumatologist appt. went. She was great, took, time with me, answered my questions and didn't make me feel as though she was in a rush.

    She said that she is almost 100% sure that my Raynauds is primary, no underlying cause, and the other problems are just what they are, what wonderful news!! She wanted to go ahead and do a complete ANA panel so we can get a baseline reading and keep track of that. She changed my blood pressure meds, turns out what they put me on will make the Raynauds worse and is part of what is making me tired all of the time. She wants me to start an excerise program, 5 minutes of stretching, 5 minutes of cardio and 5 minutes of yoga everyday (she did tell me not to feel bad if I couldn't keep up the first week especially with the yoga, my husband laughed out loud on that!!... LOL). I go back in 2 weeks for a follow-up, I feel much better about everything already!!

     

    :D ,YOU ALL ARE THE BEST!!!~~~ :D

     

    Tammy


  21. Well the day is almost here. I think that I have everything that I need to take to the appointment...primary care physician, surgeon, ob/gyn, pain clinic, physical therapy records, pictures of Raynauds attacks and a list of questions. I was just wondering what I should expect as far as tests and things, do they usually do those on the first appointment and if so what should I prepare myself for?

     

    I just want to say again what a tremendous help you have all been to me the last couple of months, thank you all so very much for all of your help and support. I would never have gone through with this without all of the great information and advice you have given. I wish you all the best!

     

    Big hugs

    Tammy

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