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mando621

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Everything posted by mando621

  1. It is hard talking to the doctor and hearing heart failure. When I called to find out what the Rheumatologist might have to say now that the cardiologist has seen me, the nurse kept saying "heart failure". I want to know what caused this, is it going to get worse? Lots more questions flooding my mind. I've been depressed for quite a while, other things in work and marriage. This isn't really helping my state of mind.
  2. Saw cardiologist today. He said I have Left Branch Bundle block (LBBB). I am going to be adding an ACE inhibitor to a Beta Blocker, daily aspirin to prevent clots. I'm wearing a Holter monitor. I have PVC's as well as LBBB atypical. Reading up on conductivity issues, it looks like this could be the result of my autoimmune issues. The cardiologist didn't think it was of major significance and didn't want to speculate as to cause. He was focused on treatment. My ejection fraction is 50% which is just slightly low.
  3. Well, finally results from the ECHO. My injection fraction is down. And I have the common malformation of a hole between the chambers. So I've been referred to a cardiologist for a second opinion and possible treatment. It has been stressful waiting for the results. I'm having a ton more fatigue than normal it seems. Don't know if that is because of this issue or stopping the plaquenil. I haven't heard from the rheumotologist yet so I don't know what his take on this will be, but I'm sure he would agree seeing the cardiologist is good. Thanks for the support.
  4. Hi, I have been dealing with UCTD for 13 years now. I have been on hydroxychloroquine since 2011. I have arrhythmia pretty much all the time. It began to get worse a few months ago and my blood pressure has been slightly elevated for me, still in the ok range. I went to my primary care doctor and they did an EKG. Found a delay in my left ventricle and now schedule for ECHO. I wrote to my rheumatologist to let him know, figured he should know about this. He wrote back to discontinue they hydroxychloroquine because it has rare instances of cardiac side effects. He said to let him kn
  5. Thanks Miocean and Joelf, it is reassuring to know that there are people who understand. I really can't talk to anyone around here without it becoming an issue. My husband brushes off most things, and when I finally shared my worries with him, he understandably said don't worry until we know for sure. So, next Friday are the echo and PFT. We will see if I get a referral after that for further testing. Looking at my most recent echo in September had a few warning signs if you look at it with connective tissue disease in mind. Bowing of the septum, pericardial effusion, right ventricle pressure
  6. Hi, It has been a long time since I've been on the forum site. I have been dealing with things quite well, at least I thought I was. I have a diagnosis of Undifferentiated Connective Tissue Disease with possible Sjogrens and Scleroderma. I was recently at my rheumatologist appointment when I mentioned that I had had a very irregular heart beat during my colonoscopy. My primary care doctor had ordered an echocardiogram which he then said came back fine and not to worry about things. I have been having slight breathlessness as I hike around campus to class and recently had to tell my daught
  7. Hi, You sound just like me. I have symptoms of both, Sjogren's and sclero, but no antibodies for either showing up yet. At times I think it is too much, and waiting for a diagnosis was driving me nuts. I finally have a rheumatologist that says, while there is something going on, there isn't a name other than UCTD (undifferentiated). So, I've been doing as Shelley advised and got busy with hobbies and interests, resting (not as much as I should), and finding good groups of people to share interests with. I've tried putting my illness/disease in the back of my mind. Now that I have some mor
  8. I recently had dental work done, and now I have cracks in all the teeth involved, upper and lower molars that had fillings replaced. I called the rheumatologist to find out if he had any thoughts. He prescribed Salagan since I haven't been able to take Evoxac. The dentist wants me to wear a mouth guard, which holds my mouth open somewhat. So I guess I'll be soaking my pillow if I generate saliva at all. My mouth is dry, but not as bad as some I've heard about. I've taken such good care of my teeth, and now it looks like I'm going to have to have crowns or implants if possible. Sjogren'
  9. Waiting on blood tests that the rheumatologist ordered. Otherwise, yes improving. The overall pain has subsided some and my knee is getting better with therapy. It was a pinched plica in the knee and bursitis of the tendons on the bottom of the knee. Rheumatologist ordered blood work to check on levels, but otherwise things are the same as usual, which is good because they aren't as bad as they were a week ago. It will be interesting to see if any changes happened with the blood work. As to reading records, I swear that they don't even try to scan through the records. When we talked about wha
  10. Thanks Jo and Shelley. Other than slow progression of some issues, I was doing great at the beginning of the school year. I can tell that stress has played a big role in the worsening of some symptoms. Summer isn't too far off, so I hopefully will have time to get the stress under control. I'm glad I tried Plaquenil, it made a big difference. One of the symptoms that has been worse is fatigue with the increase of stress. So, I will wait to see what the rheumatologist suggests.
  11. Well this is definitely appropriate timing. I came to the forum to research joint pain. I have been on Plaquinel for 7 months. It helped a lot at first. Saturday I was going up the stairs to bed and felt a slight pain in my right knee. Sunday when I woke up, I couldn't put any weight on my bent knee. An afternoon at urgent care/ER and it was declared a sprain. I was given an immobilizer which I used up to Wednesday, less each day. Incredible pain has decended on my entire body. I feel like I was hit by a truck. It seems like every tendon is screaming at me. I saw my PC and he said it is tendo
  12. Hi, I started Plaquenil 4 months ago, and I only take it every other day. I still get terrible intestinal bloating when I take it so I take it at night. Well, at first I wasn't sure it was doing anything. But now, I almost feel normal in my energy level. Of course with the summer, I'm not as loaded down as when I'm teaching full time. I'm actually back to some of my normal activities, unicycling and baking. I'm even going to enter the state fair again. I hope I don't crash because of overdoing things. I'm not going crazy at home like I could be. I just feel better. I'm able to exercis
  13. Hi. This topic is interesting. I have been more klutzy than usual, yet I still have good balance overall. I ride a unicycle and I've had it out a couple times this year already. I did get a new helmet for bike riding since I don't feel as confident as I used to with my balance. I think it is more age related. I'm worried that if I fall I will do damage. I've been riding the unicycle since I was 16. That makes it 33 years of riding this summer. I would like to learn how to stay in one place and go backwards, but I'm a little nervous of falls. Ears play a big part of balance, and I ha
  14. Is there anyway to see the full article without paying the fee to MedLine? My eyes have been so bad lately. Supposedly they weren't too bad at the othomologist appointment last month. They hurt so bad much of the time. I really would like to know what advances they have made in determining diagnosis and possible approaches to symptom relief. Thanks.
  15. Thanks everybody. I did let myself get a little freaked about the numbers. I have noticed that I'm dizzy once in a while when I am exerting myself, walking up a hill or singing. If I stop for a moment and take some deep breaths then I am okay. I wouldn't say I'm short of breath really. I'm in pretty good shape even though I'm still not what I used to be. I will wait until I hear from the doctor before completely going nuts. :) Mando.
  16. Hi, I had a PFT test yesterday, and things were going well at first. I guess I have large lungs for a person my size, and the initial measurements were 130% of normal for lung volume. Then the test for DLCO was done, and that came back at 82%. Two or three years ago the DLCO was at 88%. The person doing the tests was saying things were all good at first and saying that I have great lungs, and then got much quieter after the diffusing part of the test. He then walked me out and said that my doctor would probably have me come back in for more testing in the future. So I did some c
  17. Well, I saw the rheumatologist last week. He ordered X-ray of hips. I got a very short note that mild oesteoarthritis is in the right hip, and possible oesteoarthritis of the left hip as well. I have an order for physical therapy to see if that might help. I also have a PFT scheduled for later in the month. I asked if I had to do any more testing since I don't really have a clear diagnosis based on blood work. He told me that I should have PFT since that is one of the risks that increases as time goes on especially for those with SINE form. I had more blood work and that all came out with
  18. Hi Climber, I do research too, and that has been an issue for some of the doctors I've had. One asked me if I was studying to be a doctor. He didn't like that I'd looked up some numbers on Sjogren's. That is one thing that has fallen into the crack of not seeing someone regularly. I also changed to a different rheumatologist, and it takes 4 months to get an appointment. I haven't had an ECHO or PFT since 2010. The last EGD was 2010 too. So far those tests haven't shown any problems, but when I read the PFT reports, it looked like things had dropped a bit on the second one, yet no docto
  19. Yes, this was a post to vent. I had a pretty good primary care doctor a while ago, then her office wrote me a letter saying her practice was overloaded and if we needed to see a doctor in a reasonable amount of time then we should choose a new doctor. I changed insurance at the time and was assigned a different PC, so I went with that. Then that doctor left the practice to be the hospitalist. Now, I'm with someone else in that office since I went to so much trouble to have all my records transferred there. From the first day, when I first saw him because my swallowing was getting worse he
  20. Hi, Well I saw my new Primary Care doctor yesterday. It went as I pretty much thought it would. He asked if I was going to see my rheumatologist. Well, yes but not until March 6. So no real help. Don't take ibuprofin, instead take acetaminophen for the pain in my hips and knees. I don't think he has any interest in seeing me. Every time I come in, I get referred to a specialist. Which is good, but shouldn't my pc be coordinating my care and getting updates and show some interest? Am I being too picky? I would really like it if I could find a Primary Care Doctor that would not be impos
  21. Hi, I'll put in my 2 cents. My dry eyes are painful. It is uncomfortable and with my sicca symptoms, I think my eyes are more bothered than my mouth. I use Restasis (cyclosporine) drops and that helps me a ton. I also have tear duct plugs in the lower tear ducts. That helped a great deal especially at first. The Salagen made my heart burn so bad I couldn't take it. The pills were getting stuck part way down. Since Gareth has swallowing issues, it might not be the best thing. I use a lubricant eye drops which are my preferred, you should try a variety... everyone is different. I tried the gel.
  22. Red, The shoulder surgery was to help a shoulder separation that had not improved. I fell carrying a laundry basket over the gate at the bottom of our stairs. I hit my shoulder on the wall to catch myself and ended up with a shoulder separation. I was going through physical therapy when I felt a snap in my shoulder putting on my coat. They thought I had torn something. I wasn't getting any help from the therapy. I couldn't raise my arm up. So they took 15mm off my clavical bone, shaved the acromium bone, and cleaned up the fraying bursa. It wasn't a fun recovery, and I can still feel tight
  23. Thanks everyone for your input. I had to move my appointment since my doctor was out of the office. I did try to limit my walking a bit, now that we are back to all of our cars that will be easier. The new bed is adjustable, so that I can sleep inclined for GERD. I notice that if I sleep with my knees bent, I end up with more hip pain in the morning. I put a pillow next to me to keep me from rolling on my bad shoulder. I'm also doing my physical therapy exercises for my shoulders. I do get up often, and more often than not I'm on my feet most of the time I'm at work since I teach. I ha
  24. Hi folks. It has been a long time since I've been into the forum. I was coping with things pretty well, and I was feeling quite good. All of a sudden my hips are terribly painful. My shoulders are getting bad, like just before my shoulder surgery 3 years ago. The backs of my knees are so stiff after sitting for a while I have trouble standing at first. Last night was bad. I have been trying to not sleep on my side which bothers my shoulders. My hips were hurting and I just couldn't fall asleep. I finally got up and took some ibuprofin and eventually finally got a little sleep. In the m
  25. Hi, I was wondering what they are testing for when skin biopsy is done. I had a skin biopsy a few years ago, and it seems like they didn't really test for anything specific. All I got from the test, was that my skin showed slight thickening. I don't think they tested the cellular level to see if anything was off. I could never get any more details from the testing, and nobody ever gave me any information other than the slight thickening. Even with my lack of knowledge, I thought they should have had more detail in the results. Mando.
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