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About mando621

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  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.
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