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lynne09

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About lynne09

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    Tucson, Az
  1. I have hyperparathryoidism, along with CREST, fibromyalgia, and Sjogren's. My experience is they do a nuclear scan - you have to lie still for the scan but it wasn't a big deal. The scan shows if one of the parathyroid glands (there are 4) are enlarged. If so then a surgeon will remove that gland and the calcium returns to normal. Her doctor may also want to do a 24 hour urine collection which identifies how much calcium is spilling into the bladder. Hyperparathryroidism can cause osteoporosis due to bone calcium loss. So you do want her to pursue this. I didn't have an enlarged parathyroid gland but the surgeon wanted to check anyway so I did the surgery and they removed one gland but it hasn't made a difference to my blood calcium levels which are high normal to low high and my parathyroid hormone levels which are high. The surgery was an overnight stay but a lot of them are outpatient only. However, my case was pretty abnormal and probably reflects my autoimmune whacked out body - nothing is normal with us folks!
  2. I use the injectable kind of methotrexate - mainly because the pill form was hurting my gut, not so much there was nausea. Unfortunately though, I don't have any better days with it and my CRP is staying high in spite of it. But it is the drug that is associated with improving CREST so I guess I will stick with it. It does give me a cough though. Lynne
  3. Thank you, yes I have checked out the page many times. What I am looking for is people's experiences whether the side effects decrease? Your words are encouraging. My doctor keeps repeating if the treatment works. At the time, I was too numb to ask exactly what that means. I won't see him for another 2 and a half weeks. So partly I am wondering what experiences folks have with revatio. Thanks
  4. Has anyone used Revatio for PAH and if so did you experience side effects? I am having headaches and sleepiness which are counterproductive to say the least. Did the side effects decrease with time? Thanks, Lynne CREST with PAH
  5. My primary care doctor sent me to the rheumatologist because she thought I had fibromyalgia. When I saw the rheumatologist, I not only got the fibromyalgia diagnosis but CREST as well. What a shock! Then I read that fibromyalgia can start in childhood and it clicked. All those years that I labeled having an allergy flare (42 years total - started when I was 8) was actually a fibromyalgia flare but I can't truthfully identify the difference between a fibromaylgia flare and a sclero flare. I just know that it hurts, I ache all over, I have fever and chills and I am exhausted more so than normal. But then I have had insomnia since I was a little kid. Which comes first?? Lynne
  6. Hi Barefut - I wish you weren't having one. I just had one done on the 4th. I had to do the bicycle test with it so they could determine if I have pulmonary hypertension with exercise. That meant that they couldn't sedate me and they went in through my neck. The procedure is intense and was scarey but my anxiety didn't help any. It isn't something I recommend on a frequent basis, but now that I've been through it, it isn't as scarey just intense. The scariest part was when they put the surgical drape over me and layed out instruments on top. I knew what was going on but it was intense. I've had surgeries but usually sedated by then. Then they numb up the area and I assume cut the opening but of course I couldn't feel it. I could feel pressure when they threaded the cath through. But that is very fast. They gave me pain meds and it didn't hurt at all during the procedure - just the lidocaine part and the pressure. The pain wasn't near as much as I feared. The most painful part was the tech putting pressure on my neck to close the wound. Because of the bike part, I got to wear shorts and let me tell you, hospital gowns are much easier to tolerate when you have shorts on! With the neck entry, you have to turn your head to the side the whole time, however, the procedure was only an hour and I got to leave in three hours. I couldn't do any exercise or lifting for several days. My neck was sore for a couple of days but even that has healed. You need a ride home - they don't want you driving for 24 hours. I hope yours goes smooth and easy with good results. Lynne
  7. I've had crippling fatigue for the last 4 years due to combination of CREST, Sjogren's, fibromyalgia, and hyperparathyroidism. I started daily Vitamin D supplements of 2000 IU and have had helpful results. I am still very tired but at least feel better about it and have a little more energy.
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