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jaateach

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About jaateach

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  1. Hi, I remember coming across a chart years ago that outlined what the mild, moderate and severe range of pulmonary artery pressure is, based on the echo. Does anyone have a link or know what those numbers are. I think 25-30 is mild and 30-35 is moderate, etc. Thank you in advance for any info. Joe
  2. Thanks Shelley for the quick reply and the links. I'll report back what I find. Thanks Joe
  3. Hi All, Hope everyone is staying cool during this intense heat wave. I was wondering if anyone has had problems with their finger nails. On one finger in particular the base of the nail, where it meets the skin, I suppose that's the cuticle area, is degrading. By that I mean it is losing thickness and a ridge has formed between that area and the rest of the nail which remains normal. There is no pain. Just this area that could hold a drop of water. Just wondering if anyone has had this going on. Thanks, Joe
  4. Hi Lucy, The symptoms you speak of, the weakness and the "burn" in your muscles are exactly what I had been experiencing. Even after I was diagnosed with progressive systemic sclerosis my dr. did not think that the diagnosis of pps was responsible for the muscle issues. He sent me for some lab work to be tested for mitochondrial disorder and sure enough, I was positive. Only after treatment for this did I start getting better. Mitochondrial myopathy has a large spectrum of symptoms, similar to scleroderma, but it hits hardest in the muscles. Your symptoms sound classic mitochondrial myopat
  5. Dear JBlake, I am so sorry you are dealing with this. As I was reading your post my stomach turned into one BIG KNOT. Unfortunately your experience is not uncommon. I had symptoms for nearly 20 years. I am a male, now 47. In 06 I was so sick I ended up in the emergency room and was fortunate enough to have a doctor who actually listened to me. He did appropriate lab work and I was diagnosed with scleroderma. It felt like a dream after all these years that I actually had a diagnosis. I still wrestle with anger issues. Sooooo many doctors had dismissed me over the years. The
  6. Thresa,Hi. I am so sorry you are dealing with this symptom. I will share my experience with you, which might ramble so please forgive. I too have had the dreaded "hot head". I had sclero symptoms for near 20 years before being diagnosed with sclero, and through the years while pursuing a diagnosis I would tell doctors that perhaps the nastiest symptom within this spectrum of symptoms was this thing -- hot head. I used to walk around with an ice pack strapped to my head. Th rest of my body also feels warm but tolerable. My temperature is never high during the hot head and actually seem
  7. Hi, Just wondering if anyone has ever heard of mitochondrial myopathy? I was diagnosed with PSS in 06. After diagnosis I continued to have severe muscle cramping and weakness, including throat and muscles all the way down to groin area. I'm a teacher and the muscles in throat would really ache after talking too much. So doctor checked me for mito disease which came back positive. It is a muscle disorder. Sorry I don't have website at the ready. I was sent out to University of California at Irvine. They specialize in mito stuff. I was told there they they are seeing a lot of mito/
  8. Susie, Had a muscle biopsy done last year. Not a big deal. Still, having a driver is a good idea. There was some soreness the next day or two. They took my muscle from the shoulder. Did you ask where they are taking it? Good luck. Joe
  9. Sherion, Mitochondrial myopothy is a muscle disorder, sometimes called adult on-set muscular dystrophy. If anyone wants to learn more there is a very friendly site: umdf.org. I think the mito stuff puts me down harder than sclero stuff. Joe
  10. Hi, I also have sclero. I had developed some muscle issues; weakness, fatigue and cramping pain. My rheumatologist tested me for mitochondrial disease and the tests came back positive. It is a simple enough blood test. My rheumatologist sent me out to Irvine cal. where they are doing some cutting edge research on mitochondrial disease. The doctor there told me that they are seeing sclero patients with positive mito. They actually think that mito may have caused the sclero. Hard to get my bbrain around this. Sclero will always be my first love... ha, ha, ha.... Goood luck,
  11. My rheumatologist described sclero this way: it is sort of like a glacier moving through. it is at it worst during onset and then as the glacier passes through one is left with the features that is left behind. generally one does not need to worry about new symptoms. this of course is VERY general. it does seem to match with my own story. joe
  12. my legs used to ache all the time. dr. put me on verapamil. worked well.
  13. I've been in the building trades all my life. Particularly hanging and finishing wall board, painting. I've been sick since I was 28, I'm now 45. I got out of the trades 6 years ago. Health issues persist. Joe
  14. Hi, Well, i have sclero and when I developed sever muscle weakness my dr. had me checked for a disease called mitochondrial myopothy and sure enough I have it. now, anytime I hear one complain of muscle weakness I suggest looking into that. it is a simple blood test. google mitochondrial disease and you'll get a bunch of stuff. worth a try. good luck.. any questions, hit me back. joe
  15. Jennifer, Check my recent post about mitochondrial disease. My muscle weakness sounds similar to yours. My rheumatologist did what is called an exercise test. They take blood with your body at rest. Then you do a six minute walk, as vigerous as you can, then they take more blood. They measure the increase of sevefral things, one of which is lactic acid. This disease causes serious muscle weakness. I am a long distance runner and when this hit I was not able to walk up a flight of stairs. Ask for an exercise test. Hope this helps. Joe
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