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mando621

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About mando621

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    Wisconsin
  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 know when the ECHO is done so he can look it up, they don't automatically send him the info. I looked up cardiac involvement with hydroxychloroquine and it is scary. Has anyone else ever had issues like this? Mando
  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 42. I have a small hole between atrial chambers. Slight regurgitation in mitral valve. The cardiologist that read the echo didn't think it was significant, but my rheumatologist said that this is missed if you aren't familiar with CTD. I met with my knitting group tonight. The big topic of discussion was my daughter, 23 yr old, that recently went through surgery to remove a cancerous colon polyp. If stress makes this stuff worse, I've had a lot lately. Mando.
  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 daughter to walk slower when we were out together. Usually they were telling me to slow down. The rheumatologist looked at the echo report, and said that it indicates that there is a possibility of pulmonary hypertension, pulmonary arterial hypertension. He has ordered another echo and PFT tests. My last PFT was 2 years ago since last year the rheumatologist didn't think I needed one. Also may end up with heart cath if needed. There is one pulmonologist at the hospital I go to that specializes in PH/PAH so if I need a heart cath I'm going to see if I can get a referral to him. My rheumatologist said that my primary care doctor wouldn't have known what to look for. Anyway, this is really getting to me. I have come to terms with most of the issues I have and I really felt that I was managing well. I have very little as far as skin changes, just some tight facial skin and smooth fingers and palms. I don't want to jump to conclusions just yet, but this is quite a blow. While I have escaped many issues that a patient with scleroderma must deal with, I may have an issue that changes the whole picture. So, thanks for a little venting. Also, make sure that you see your rheumatologist regularly and that they know connective tissue disease issues or this kind of thing could go unnoticed. Mando.
  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 more issues to deal with, it is back in front, but I hope I can get back to "regular" as much as possible. If you are dealing with the symptoms, and someone is watching to make sure things don't get worse all of a sudden, try not to dwell on a diagnosis too much. It will make you feel frustrated. Lori
  8. 4 cracked teeth

    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's is a PAIN!! I'm getting a second opinion on the teeth from a "crown/implant" expert hopefully. I'd rather not mess around with fixes that are not going to work and cause more problems. :(
  9. Going off Plaquenil

    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 what I could do for my dry mouth, he suggested some medications. I've tried one and it caused too much trouble with my esophagus and stomach. He looked at me funny when I said I couldn't swallow pills and that apple sauce is the worst thing to swallow. My daughter hates swallowing pills and it is not the same as having an esophagus that isn't sending things down. I think he forgot that I have esophageal dysmotility and my gastro is even in the same clinic. He suggested a big glass of water. :( Thanks for thinking of me. Mando.
  10. Going off Plaquenil

    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. Going off Plaquenil

    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 tendonitis, order for PT. Well, he also said that it is tied to the connective tissue disease I have. Yesterday the pain was so bad that I called the rheumatologist out of desperation. I talked to the nurse today, and after she passed my questions on to the doctor, I have an appointment to see him Tuesday. Luckily spring break! Yay! Would an injury cause reaction like this? I think I might have a small tear in the knee tendon or at least strained it somehow. Don't know how, but I was hanging laundry up on the lines in the basement. I've been limping around, so I know I have thrown off my normal stride. But elbows hurt, big toes hurt, both knees now, ankles, wrists, fingers even. My hips hurt, but I know I have some arthritis there. Tried taking ibuprofin for a while, but tummy won't take it anymore. I don't like taking acetaminophen too often. Really concerned I could easily take too much. Mando.
  12. Back to near normal?

    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 exercise once again. There are still cobwebs and other things that need addressing, but I'd rather do some fun things now that I feel slightly better. Is this a phase? Will it continue to help or does it sometimes quit helping? Mando.
  13. Losing Balance

    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 have continual ringing in my left ear, which started about the same time everything else did with my UCTD. I haven't had the vestibular dizziness that my husband has had where he couldn't even walk without getting ill. I am dropping more things, and I don't know if that is not paying attention, or if my fingers are getting stiffer and smoother. My physical therapist years ago said there are exercizes to help with inner ear issues with dizziness, and chiropractors usually know those too. Mando.
  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. PFT question

    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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