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Everything posted by Tammy

  1. Tammy

    Send Me Some Motivation

    **motivation** :D happy thoughts :D ((hugs)) **motivation** :D happy thoughts :D ((hugs))........ Tammy
  2. Having a new endo run new tests is what I was thinking too peanut, it has been so long ago that nothing in the old medical records would be the same. The only thing that I can come up with is that I don't even know for sure what type of tumor it was and that is a big factor when dealing with this I guess and maybe she needs a starting place. I wrote up what I could remember and faxed that along with the insurance claims that had some of the diagnosis to my pc today as she requested. She is going to go over them, make a few calls and see where we can go from there. I have my rheumatologist appt on the 4th, maybe that will help get things moving toward a new endo as well, I have been told that people who have pituitary tumors or damage to the gland after tumor removal often develop autoimmune diseases. I may hold off on the endo until I see the rheumatologist.
  3. Hello again everyone. As most all of you know I am going next month to the rheumatologist for CREST tests and to see if I can't get something more done for my Raynauds. I went Monday and picked up some medical records that I was asked to take to my appointment and of course I had to look over them. :unsure: On the endoscopy that the surgeon did on my stomach he noted that I have antritis without the presence of H-pylori and recommended that I not use asprin or nsaids, I knew nothing of this and primary care physician but me back on Feldene a few weeks ago for the arthritis in my hips. I am also having to go see an endocrinologist next month and if I can't keep 2 dr's on the "same page" how do you handle 3 or 4? It seems that I can't keep track of much anymore (I had to turn over the bill paying to my husband because I was forgetting stuff every month...lol). How in the world do you all do it? Best wishes to all~~ Tammy
  4. Tammy

    Gall Bladder Surgery

    kelowna52~~ I had this surgery earlier this year. My surgeon did tell me that often times after the gall bladder is removed it frequently causes diarrhea. Like you I also have IBS and have not noted a big change in stool habits since my surgery. I had a few complications myself but I also have an adrenal deficiency from damage to my pituitary gland. All in all I would say that the surgery went well, and I am not suffering half as much as I was. It is a pretty routine surgery and usually done laproscopicly so there is minimal invasion, just a few small incesions. What is the cause of the decrease in function, did he say? I hope this has helped you some, keep us posted! Best wishes~~ Tammy
  5. I love this thread, it's the first time I have smiled all day I think. My name is actually Tamara but I have been called Tammy for years (easier to pronounce and when you live in the south, the easier the better when it comes to that "suuuthern draaaw"...lol). I also use bright_halo alot because my mom has always told me that I am her angel.
  6. I am so frustrated!! The endo dr in Tulsa has now refused to see me because I can not get records for the past medical history of the pituitary tumor. I spent most of my breaks (including lunch) on the phone with hospitals and clinics. I was transferred from medical records to medical archives the lady in archives said they only keep them at the facility for 10 years, I asked if they destroyed them or just moved them to another facility she wasn't sure so I asked to speak to someone who would know, that lady was "...either on another line or away from my desk..." so I had to leave a message and guess what...she never returned my call! My mother was able to go to her benefits counselor and with the help of their corporate office, they pulled up the insurance claims that had some of the info. My pc dr wants me to write down everything that I remember about it but for goodness sake, I was barely 17 and scared to death not to mention that most of what they said was way beyond my anatomy and physiology class!! With everything else that is going on right now, I am positively at my witts end! Does any one have any suggestions?!? Sorry about the venting! Tammy
  7. Kamlesh, thank you for the tips! Most of the dr's that I am currently seeing will provide their dictations to each other but at this point I don't know who is paying attention to what! All of the blood tests that I have had done in the past year have a low Bun and the latest has low Bun and low BUN/ creatinine ratio, so low that it would already put me in a stage 2 of chronic kidney damage, no one ever mentioned any of this to me so needless to say not one of the dr's are even checking it periodically... but there it is in the medical records! I am planning on bringing all of this up to the rheumatologist next month even though I have no clue if it is at all realtive to this but you have all tought me that being my own advocate is the absolute best thing that I can do for myself and I can not thank you all enough for all the help that you have given me over the last couple of months!! Big Hugs to You All!!! Tammy
  8. Thanks so much for the replies and advice. I would love to have all of my physicians in one palce but when you live in a rural area that is very difficult. The few specialists that we did have close to this area have almost all transferred their practices to the northern part of the state where the population is booming. The rheumatologist that I am going to see on the 4th is over 2 hours away and the endocrinologist is even further in the opposite direction (I am going to Tulsa for the endo, she specializes in pituitary dysfunction), my pc is in the town that I work in but I just found out that she is having a baby and will be going out on maternity leave in about 6 or 7 months. I thought about changing the rheumatologist to one in Tulsa as well but it has taken so long to get in to see this one that I really hate to change and have to wait again. Most of the physicians reoprts that I have had to get to take to the rheumatologist were free for the first report but I had to pay my ob/gyn $25 for his. I think that I will try keeping a journal for each physician and have decided that if they tell me something that I don't understand...ASK!
  9. Tammy


    Hi Sam~~ The Antivert (Meclizine is the generic name) that your father is using is the most commonly prescribed med for vertigo and also used to help with nausea but it can also cause dizziness, so can some antibiotics. If the Antivert isn't working well for him I would contact the physician that prescribed it, there are other things that may help a little better. Do they know what is causing the blood in his urine? That is great news about the house, there is nothing quite like that "Going Home" feeling!! By the way, how is your physical therapy going? My Best Wishes to You and Your Dad~~ Tammy
  10. Tammy


    I was just wondering if any of you have or had a pituitary tumor? I am still researching for the rheumatologist appt. and went to a site for pituitary tumors and found that the antibodies that are discussed so much on this site are also antibodies that they check in people that have or had pituitary tumors. I was just wondering if there is a connection in some way. Thanks again for replies~~ Tammy
  11. Tammy


    kiwimum03~~ I don't really know much about any of this either. My primary care physician wants me to see a rheumatologist (my appt. is the 4th of next month) for CREST tests and I had a pituitary tumor removed when I was 17 with some damage to the gland. Tammy
  12. Lately my hands, especially the right, are very stiff. It causes pain up into my wrist if I try to extend my fingers completely out or curl them all the way in, the skin is very tight as well. I've seen some posts talking about hand excercises, what are some them, is there a place on the sight to find them?
  13. Tammy

    High Pulse Rate

    Peanut-- I too am on a medicine for hbp, my pulse is usually high. If you can take your oxygen and walk a little bit everyday, not strenous walking though, that may help your pulse rate drop some, crazy as it sounds Take care Tammy
  14. I finally confided in my sister what is going on, she convinced me to keep the rheumatologist appt., if just for peace of mind. I have to take all medical records that are related to what I am seeing the rheumatologist for. I have the records from my primary care physician but I'm not sure if I need records from my ob/gyn. I have fibroid tumors and I have searched the sight for "tumors" but haven't really found that much. Also when I had my colonoscopy and upper endoscopy earlier this year I had intestinal inflammation that is usually common with H-pylori but I didn't have any H-pylori bacteria but they had me do a round of meds just in case, do I need the report from that surgeon as well? I hate to keep bugging you all with these stupid questions and I want you to know how very much I truely appreciate all of your help!! Big Hugs to You All!!! Tammy
  15. Tammy

    My New Job...

    Jennifer, Ooooh how wonderful for you!! My sister works with the a rescue group in Oklahoma rescuing, taking in and caring for abused and abandoned Jack Russels, she positively loves it!! I think that it's great that you have a job that you will truely love!! I hope your tooth is getting better!! Tammy
  16. I know that my rheumatologist appointment isn't for another month but I am trying to learn as muh about this as I can before then. I can't tell you all how much help you have ALREADY been. I have another question: Is Raynauds ever JUST Raynauds, no link to other problems? As far as I can tell right now that is my main link to scleroderma I think. Does the extent of the Raynauds mean anything, like if it affects the hands and feet, some skin tightening and thickness on the hands? Thanks AGAIN everyone! Tammy
  17. Hello again everyone. For about the past 3 weeks I have noticed a spot on the tip of one of my fingers that is red, hard and has a white spot in the middle, the tip of the finger is also swollen, but it is not tender in anyway. I have Raynauds but I have not had anything like this before. I thought at first that maybe I had burnt my finger and just didn't remember doing it but it's not going away. I also have a split on the same finger right under the nail. If it is the start of a finger ulcer or calcinosis is there anything that I can do to "nip it in the bud"? I don't see a rheumatologist until Oct., should I consult with my primary care physician in the mean time or just keep on eye on it? Thanks Tammy
  18. Tammy

    Being My Own Advocate

    I am thinking about cancelling the appt. with the rheumatologist, I really don't think that I have scleroderma or any other autoimmune problems. I have had raynauds for about 15 years so I think that it would have progressed by now. Any of the other symptoms I think I can relate to other problems, I had a pituitary tumor removed (with some damage to the gland) when I was 17 and I think that alot of the problems stem from that. I have had colitis since before the raynauds, so the IBS was really no suprise, as for the SOB, I have asthma. My husband agrees with me, what do you all think? Did you go through this back and forth thing too?
  19. Tammy

    Being My Own Advocate

    Thanks janey for the link, it was very helpful! I also found a site, Raynauds Association, through that link. Does anyone know if there is a connection between Raynauds and varicose and spider veins? Thanks Tammy
  20. Tammy

    Recent Blood Work

    I am sorry to hear about the increase in your CRP levels. Know that I will be thinking of you and wishing the best! Please let us know what the rheumatologist says. (((((BIG HUGS))))) Tammy
  21. In my first post a few weeks ago I asked if it was worth knowing if you have scleroderma. Since then you have all convinced me that it is, even if there is no cure at this time there are treatments and I am very grateful that I found this website! I have an appointment with a rheumotologist in October, they requested that I bring a copy of my medical records, I picked them up from my primary care physician Thursday. I have been looking over it and WOW is all I can say! I noticed that every time I had a CMP the BUN level is LOW, this can indicate liver disease and that reminded me that when I had my gall bladder removed in February they said that my liver was a bit inflammed. The 2 latest CMP's that I had done were 3 months after I had my gall bladder removed. Nothing was ever said to me about the low BUN but it seems to me that with everything else (Raynauds, tight skin, adema, arthritis...) someone in the host of dr's that I have seen should have picked up on something! I am not trying to diagnose myself but it seems to me that perhaps our health care providers just don't know enough, if any, about this disease!! Now I am wondering what would it take to make it well known, to get it on the list with things like cancer and diabetes so WE can push for a cure? I am sure that this has been brought up numerous times but I find myself wanting to DO something! Best Wishes to All Tammy
  22. I understand what you guys are saying, we are the only ones who know what it TRUELY going on with our bodies and with all of the different types and symptoms of this it is a very complicated and complex thing to diagnose. In the last 7 or 8 years I have seen 8 different doctors (unfortunately the dr who first suspected scleroderma was no longer covered by my insurance), including a rheumatologist who would not even do any tests because of my age and the rarity of it. I made each dr aware of the possibility. When the Raynauds got so bad that I couldn't even carry a cold drink I saw my new primary care physician, he put me on a calcium channel blocker. I took it for about 2 weeks and noticed that my swelling had worsened, I asked my pharmacist, who is also my boss, if I should continue the new med, he said that I should leave if off and contact my dr, I did. The only thing that my dr said was, yeah, he's right, leave it off...no let's try something else, or lets do some blood work, come in and see me...NOTHING!! When my hips and legs got so bad that I couldn't step up on a stair without literally pulling myself up by the rail and my legs would buckle when I walked, his suggestion...you should probably get a cane, I was 28 years old!!!! I have since changed primary care physician's again (this time of my own accord), I usually see his APN, which is fine, she is very good at her job. Several weeks ago when I brought the CREST and scleroderma up to her, she had never even heard of them, she had to consult with the dr on that one. When I went for my follow up she had been researching this on her own and after talking to the dr they felt that it was a good idea that I see a rheumatologist again because in there opinions it is likely that I have some type of this. I read the posts and personal stories and my heart breaks for everyone and their families, I guess maybe I have hit that frustrated and nervous stage, October seems like a long wait now. I wish each and everyone of you the best of luck in life and medicine!! BIG HUGS Tammy
  23. Tammy

    For Pity's Sake

    Thank you Janey and Erin, you have been so much help! I can't tell you how much I appreciate it! I am so glad that I found this site, you all are the BEST! Tammy
  24. Tammy

    For Pity's Sake

    I just got home from my dentists appointment, over 2 hours of being on my head! He had to cut out my wisdom tooth (after prying it out of the gum!) The main nerve that runs through your face was some how wrapped around the root, OF ALL THINGS!! After he finally gets it out he tells me that he may have nicked the nerve and that I may not regain feeling in the left side of my face or my tongue, I can't believe this! At this moment I feel like I am drowning, I don't think that I can take much more bad news from any direction!!
  25. Tammy

    For Pity's Sake

    I finally decided yesterday that I better go see an oral surgeon for this tooth problem. The pain has gotten soo bad, I haven't been able to sleep more than a couple of hours a night so to top it all off I am exhausted! I know the pain is from the exposed bone and infection, my whole face is swollen, even my eye socket! Admist all this complaining (SORRY!) I do have a question. Do I need to tell this dr that my primary care physician thinks that I have an autoimmune disorder? I am going to see him in the morning and I don't take any type of medication (other than for hbp) but does he need to be aware of this? Thanks All Tammy