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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 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. 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. 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. 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 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. 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. 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. 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 checking on what I could find. It looks like 80% is the cut-off for possible pulmonary hypertension. So is this bad? I think that the previous PFT with the 88% was circled and made note of. I don't like that it decreased, but at least it didn't decrease at a fast rate. Mando.
  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 within normal ranges, once again. I started plaquenil and I have an eye doctor appointment for next month. So I guess that brings me up to date on all my stuff. Now, I have to call the GI doctor back to see what he has to say after EGD came back without any issues. My motility is getting worse, but at least I don't have any serious issues in the esophagus or stomach that are beyond that. Mando.
  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 doctor has been concerned yet. Since I changed rheumatologists, I will probably have to go to a different lab and hospital to get those done, so I should be getting records from the other clinic before my March 6 appointment! Yikes. I forgot that. Good thing I've been reading here lately. I have been labeled with UCTD since I don't have the antibodies to declare it scleroderma. One doctor I saw called it undifferentiated scleroderma. That bothered me a lot at first, but I've come to terms with it. I now consider it a good thing in some ways. Maybe it won't become full blown scleroderma. (not sure if I'm trying to talk myself into that one.) My eyelids are getting tighter, which is weird. My mom's eyes are so baggy she always complains about it. Mine are exactly the opposite now. When I sleep, I seem to have trouble closing my eyes all the way especially if I'm laying on my side. I have to squeeze my eyes shut. So, if it continues, I guess I will have the benefits of the face lift scleroderma gives us without the label. Mando.
  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 has referred me to the specialists. I don't have too many problems of general nature actually. I have records from prevous medical appointments and tests, but I haven't been keeping up with things most recently. I should request the copies from the last year or so. That reminds me, I don't think my test records ever got to the GI specialist. I called to speak with the nurse at the GI about terrible GERD trouble I have had, left my cell phone number so they could reach me where ever I might be, and they called my home number. In fact, I called and left my cell phone number again, and they once again called my home number. Sorry for the venting. I have actually been better about that too. I started a knitting group here in my hometown, we meet twice a month. It is a great place to meet new friends and talk about what is going on. It has been way better than going to a counselor. I also attend two Irish sessions a week, and that is great fun! I decided I wasn't going to let myself wait to get involved in things. The interaction with real peole has made a huge difference in how I feel. My husband encourages me to attend all these events even though I'm sometimes out three nights a week. He can tell a difference in how I'm feeling and what kind of mood I'm in. Tonight, one of my friends from knitting group is coming over for dinner with her husband and 2 year old daughter. So, I need to run the vacuum around, and get started on my meal. Got to get the hubby to pick up a bit upstairs since I'm sure he will give them a tour of the house. Have a great weekend folks!
  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 impossible to get in to see, and one that would show that they are interested in learning about UCTD/scleroderma, helping me coordinate my specialists and tests I should be getting. ARRG! I guess I'm expecting too much. Mando.
  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. It didn't seem to help all that much for the inconvenience of not seeing for a while since it makes your vision blurry for a short time. I know someone with dry eyes as the result of laser eye surgery, and she says her eyes are extremely painful. Salagen helped with my mouth but not so much my eyes. I do a lot of squeezing my eyes shut to get some moisture to distribute in the eye. If he is doing that you might want to try some drops. Mando.
  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 tightness in that shoulder but it is much better now. As is happening right now, I go for a while with no problems. Then I do something that irritates my shoulder and I have to work on the therapy exercises with the elastic band to build up my muscles again. I am able to play my fiddle again. I go to two sessions a week and between the 2 play for about 5 hours. That is probably more than I should at one time (3 hours sometimes at a time). So the exercises help. If you are considering shoulder surgery for something, just be aware that the recovery can be long. A joint replacement might be easier than what I had done. Everyone is different. I'm glad I did it, but I'm trying to avoid having any problems with the other shoulder because I wouldn't go through it again without major hesitation. Mando.
  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 have to watch how I'm standing so that I don't rest on one hip/leg. I have orthotics for my shoes and they were checked again this summer. The orthotist thought they were fine and would be good for years of use. I wonder if there would be some form of exercise I could use to help my hip area get stronger so that I wouldn't have so much pain. I did squats the other day - bad idea. I was doing some ballet exercises from my past days as a dancer (5 years - 13 years old). I thought that was going well, I guess I added too much walking to the picture too fast. I stand in 5th and 2nd position (ballet style) much of the time. I'm sure this isn't helping my hips. Introducing new shoes can be a bad thing for me. I've had unbearable heel pain or leg pain from a new pair of shoes. Thanks again. Mando.
  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 morning I had terrible heart burn and the golf ball feeling in my esophagus. Great, I've irritated my poor esophagus. I have an appointment to see my general practitioner next Friday, and I hope I can make it till then. I see my rheumatologist March 6. I think this feels like tendons or ligaments that are sore. Possibly bursitis especially of the hips. Is this typical of connective tissue disorder or is it just an age thing. I'm 48. I've been walking to work about the same time I got the really sore hips. I'm fine in the morning, but if I sit for a while during the day I end up with sharp pain in the outside of my hips when I try walking. I am a little sore at night, but we just got new beds. The other night at the grocery store, I was using the cart like a walker to get around. It hurt so much to put my weight on my hips. I thought I'd read an older post about joint pain like this. Other than NSAIDS which are not good for my esophagus dysmotility and reflux are there any other options? I'm not on Plaquenil because it gave me such gastric distress in the past. The only medication I really am on is Restasis (cyclosporine). Mando.
  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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