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Everything posted by betty32506

  1. That is a problem for me also. I use plain petroleum jelly and apply it with a q-tip. Betty
  2. I developed bad sores and sensitivty in my mouth. The dentist should have known but didn't. The Rheumatologist diagnosed Sjogrens and prescribed Evoxac. It took some time but cleared up. I changed dentists and he gave me samples of Biotene products. I keep a very small bottle of the mouth wash with me and a one drop touch does a lot but is not enough to require spitting. A small amount on your tooth brush with regular tooth paste helps. I don't like their tooth paste. Betty
  3. On a positive note... I went to a new doctor and when Raynaud's was mentioned it was easy to show her. I took off one shoe and sock and said it won't take long. In less than a minute walla...there it was. We could watch the whole process. My feet are most problematic. I always wear socks, not always wear shoes (at home of course), but got to have those socks. Betty
  4. I too continue to have positive SCL 70s. The most recent was 248 in a range of <100. I just saw my rheumatologist and she felt my skin and said "no". I've been trying to understand symptoms that do not include skin. I understand and share your concerns. Betty
  5. Thanks for your information. I reread those references hoping to find something new. Betty
  6. <My rheumatologist suggested that I might be able to take half the medication I normally take> Buttons, Sorry to jump in like this but I would like to know what meds you take for it. Thanks. Betty
  7. I get copies of my labs and test but getting doctors notes is a different problem. I have had lots of errors in my records. There have been only minor medical problems because of errors. There was a legal one that I was afraid would cause a problem. That was after an automobile crash the doctor said "the seat belt gave way". We had to sue to get the claim paid. Lawsuits and insurance scams as they are I was glad it wasn't a problem. They could have blamed the auto manufacturer. Betty
  8. I am glad to see things are going that well. The last several years I have been tested for Scl-70. Sometimes they are positive and sometimes negative. I don't think I have symptoms that we can attribute to scleroderma. I don't know which tests are related. I have tested positive for lupus and the rheumatologist told me I don't have lupus. She wrote to my general practitioner that I do. Go figure. I think she doesn't know what I have. Thankfully none of my problems are extreme. I have been diagnosed with Raynaud's, Sjogren's and tested positive for a few other things. The good news is no RA. Betty
  9. OOOPS Bad typo: Single lenses as you mention is probably the same as the reading part of the glasses. That should have been same as the top (distance) part. Betty
  10. I'm sorry for your loss. These times can be trying. I use the something in the hand trick. I always hold it in my right hand and extend my left. People tend to grasp the left handed shake differently. Some times I would hold the item with both hands. This also seems to cut down on the vigor of a hug. I have some problems with my hands and I played the organ. If someone grabs my hand it greatly effects my playing. Since I can no longer play I use variations of these techniques. Betty
  11. Trifocals help me. Single lenses as you mention is probably the same as the reading part of the glasses. You have to learn to only look through the bottom of the glasses for closeup. I never had a problem getting used to multi focal lenses so this was not a problem for me. Betty
  12. My mouth became very sensitive to everything. Things even slightly spicy burned. I could not use any regular toothpaste. I tried many different things to help clean my mouth. Finally found a kids toothpaste that was bubble gum flavor. Not good. I used a very soft toothbrush designed for infants. This went on for weeks. Then I developed little sores in my mouth. The rheumatologist diagnosed it as Sjogrens. She prescribed Evoxac. Gradually it cleared up. It is good now and I am back to regular products but use the Evoxac regularly. Also the dentist gave me samples of Biotene. There is mouthwash, toothpaste and one to use to help with the dry mouth. I use the mouth wash. It is a weird stuff works oddly. It was not in the toothpaste section but another group of such things. My problem was over months, not days. Betty
  13. I have been on Evoxac for 6 months and it is a big help. I had sores in my mouth and they have cleared up. I have acid reflux and take the "purple pill". I have long had problems along that line. Sometimes it is better or worse. I also eat Tums and Pepto Bismal. I have not connected that to the Evoxac. But of course there could be a connection. Betty
  14. While I was undiagnosed with Raynauds my thumb would slip out of joint. It just about paralyze me for a few seconds. Since I played organ or keyboard at church that created problems. A hand surgeon made me a joint out of a tendon from the arm. He said an artificial joint would not work as the thumb is used so much it would wear out soon.That was a real surprise. Recovery was slow and very painful. I also had foot surgery for tarsal tunnel in a foot. My daughter, 40 years of being diabetic has long had problems with her hands. They were claw like so she could not straighten both her hands. For years no one offered suggestion. A few months ago a doctor said he could fix it. He did surgery which he said was carpal tunnel. It was minor enough that she had both hands done at once. Of course she had to have help for a few days. The reason she had both done at the same time is it is about a 3 hour drive each way. It has fixed her hands! She keeps asking herself why that wasn't done a few years ago. I am surprised that carpal tunnel was the cause of all her fingers. Her recovery was quick and not bad. Betty V.
  15. I'm trying to find out if CMT (Charcot Marie Tooth) is an autoimmune problem. I see it mentioned here from time to time so perhaps someone can help. Betty V.
  16. Janey, Thanks. The lady I was asking for has neuropathy so bad she is using a walker. Since my neuropathy is not related to my diabetes this came up. Two of her kids also have it. Your reference is interesting. Betty V.
  17. Shelly, Thanks for the response with that info. The person with this is has "neuropathy" so severe she is on a walker. My neuropathy is not caused by being diabetic and when this came up it created this discussion. Two of her kids also have it. Since primary and secondary sometimes cause needs for different handling brought the questions. It is a bad condition to live with. Betty V
  18. Shelley, Thanks. I had concluded it is inherited but did not know if it could also be auto immune. Betty
  19. I took Reglan for months but don't remember how long. I was taking it for gastroparaesis. It was the only thing I found to help. It was pulled from the least for here. I have had tremors but considered it my age (70s). Recently the TV has many ads for attornys for the lawsuits concerning tardive kenesia. A Google search for Reglan Lawsuits brings up pages. I heard an ad just a couple days ago even though looking at dates it has been a while. I have read about this problem and do not think it is a problem with me. Betty
  20. I had problems with both my hands and my feet for years but never looked into it. I had a minor unrelated surgery where I was somewhat aware of what was going on. I kept hearing the bells go off and thought it was my heart. They realized it was bothering me and turned it off. Coming out the anesthesthesiologist told me I had better have the Raynauds looked into. That was the first I had ever heard about Raynauds. Also that was before I had seen a rheumatologist and did not know about all the other problems. Since that I have had numerous occasions that involves the finger clips for oxygen. It will not work on my fingers or my toes even when they are warm and look normal. I have had it put on my ear and once they taped the sensor directly to my finger. I regularly see a lung doctor (no breathing problems) and part of the check in exam always includes this check. The person checking me in always acts surprised as if that was a new experience, and they so check every patient. I have not asked the doctor about it but plan to the next time I see him. Raynauds is a minor problem and I just try to do the things I see that helps. Gloves do little to help I think because there is not enough warmth to hold in. I have not been diagnosed with Sclero but get a positive on almost all labs except, thankfully, RA. The rheumatologist. has verified the Raynauds and has given additional diagnosis. Does anyone have any comments on why the oxygen clip will not work on me? THANKFULLY I live in Florida. :VeryHappy: Betty
  21. Questioning this note? S.D. Moderator Hold Please! Hold for Janey or Shelley please. External links issue. Ta! JMcC Note to moderator: I replied to this post last night. If it was pulled out I apologize for reposting. Otherwise I assume it was lost. Karen, It looks like that lab may be using the same cloudy data that I ran into. Did you figure the GFR from the calculator or was it included on the lab slip? Stages of kidney failure do have ranges. A GFR of 57(%) is entering stage 3. Stage 3 is 30-59. The other calculator I sent was from the National Kidney Foundation. The National Kidney Foundation site is a wealth of information. Glomerular Filtration Rate (GFR) This is not panic time. Kidney failure usually happens slowly and you can stay at the same stage for years. Stage 4 is where you start to take action. The main thing with stage 3 is to watch your createnne and knowow that ANSAIDS can be kidney killers so take as few of them as you can get away with. I do not know when kidney failure effects the EPO. I am not trying to give medical advice, just where to find relevent information. Betty
  22. Hi Ozzy, I keep a really red sore throat and have been having mouth sores. It feels like I have a lump in the bottom of my throat. The sores in my mouth are mostly like small blisters but do not come to a head. My Rheumatologist quickly said Sjogrens. I have not had a lip biopsy but that didn't matter to her. Evoxac has helped a lot. Betty
  23. I wasn't sure this subject was addressed on this site. When I found Janey's page thought perhaps it is. Diabetic research shows an increasing need to know the difference in types of diabetes. I consider myself LADA on the basis of a positive GAD 65 test, I am not overweight, and have several other autoimmune problems. I was in my late 60's when glucose problems began to show up. I began cutting carbs and controlled it well for a few years. I didn't note dates so am unsure about specific dates. I began to have digestive problems, later diagnosed as gastroparaesis and asked my general practitioner for meds so that I could put the carbs back in my diet. That was 3-4 years ago. I now take Metformin, Ameryl and for bolus Starlex. My A1Cs run around mid 5s. My BMI is 18.6. C-Peptide mid range. I am now 76. Now for the questions. Is that enough information to know I am LADA? Would the C-Peptide being in mid range indicate that the problem is not glucose resistance? Is a positive GAD 65 test on 1 GAD testing enough or does it need to be repeated for verification? What other test should be done to rule out insulin resistance? On the diabetic forums I conclude that the older a person is when the glucose problems shows up the slower it progresses thus making it a longer period of time that it can be controlled without insulin. I read on this site that many times doctors are a problem and cannot always be taken as knowing what they should. That is why I left the Endo and see my general practitioner. He doesn't claim to know all the intricacies and has no problems with my input. Multiply that by several times and you can come up with my level of trust of doctors in regard to diabetes. I raised a diabetic child, now 50, and found it necessary to control things myself. The diabetes communities now can't even agree on many aspects of managing diabetes. Comments appreciated. Betty32506
  24. I had the Schirmer's test long before I knew anything about any of this stuff. I remember it, don't recall it being painful nor what the results. For years the eye doctor's have told me I had dry eyes. The last few years I have had work done by the opthalmologist. Last time I saw him, but before the rheumatologist said Sjogren's, I asked him if I had dry eyes. He said I do but the extent of it was not specified. I will be more specific next time I see him. The Piroxicam the rheumatologist gave me the eye doctor said to not take. Can someone tell me which labs are done to indicate dry eyes? Betty
  25. My eyes and mouth are somewhat dry. They have been worse at times which I thought was meds. My nose and sinus are very dry. I got sores in my mouth so bad until it made eating difficult and mouth hygiene impossible. I could not find a toothpaste that did not burn until I found one for kids. That was a little better. I asked my general practitioner and a dentist without help. Then at my rheumatologist I asked her. Quickly she said Sjogrens and gave me a script for Evoxac. That has helped some. Today the roof of my mouth is very sore. A few days ago I went to an ENT and he said it looks like Sjogrens. The only diagnostics I have had was blood labs. I wondered at her quick diagnosis....and why didn't the dentist know. My general practitioner says the rheumatologist specializes in Sjogrens. Another forum I am on says I should have the lip biopsy and the eye test as that is the gold standard for a legal diagnosis. I don't have any reason for a legal diagnosis that I know of. I don't see a reason for the tests. What do you think? Betty