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beverly

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About beverly

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    Bronze Member

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    Washington
  1. Thank you Shelley for the link. I have experienced "symptoms" of ph for quite a few years it just seems though in the last 6 months my symptoms have increased quite a bit. Mostly chest pains, light headed and lots of fatigue. I am waiting on an echo, I had one 3 months ago, it said there was mild dilation in the vena cava and they couldn't find my pulmonary pressure so they have done a follow up this week. I just haven't noticed shortness of breath or I wonder if I have just gotten use to breathing a certain way. I thought that was one of the symptoms needed to diagnose Ph. Thank you Beverly
  2. Ok those who have SPH, I was wondering when did you start noticing shortness of breath, if at all? How long did it take you to get a diagnosis from your doctor and what did you go through to get it? Were you excercising when you were diagnosed? How many of you have chest pains and are lightheaded? Is it from scleroderma or your PH? Just a few questions :mellow: Beverly
  3. Dear Kiwi, My heart aches for you right now, know that everything in life happens for a reason and sometimes we don't see what lies ahead for us in the future. I do hope that you will receive some good news soon. Keep your head up, go ahead and cry. Than refocus all that energy into things you have control over. Take care Beverly
  4. Wow, I feel so much better. I can't tell you how many times I feel like a child when I take forever to get my change out of my wallet( I am cracking up) I guess it's my duty in life to teach everyone patience! I love it. Thanks for the idea of just dropping my stuff in my purse I bother to much organizing. Take care Beverly
  5. I actually never was able to take the test my symptoms decreased and they felt it unneccesary. I actually forgot all about this post. I hope your test goes well. Take care Beverly
  6. What is the rash like and where? Does it itch like crazy on your trunk and under your arms? Thank you for the links and information.
  7. Does anyone suffer from this along with there scleroderma. If so what are your symptoms, do you have a rash? Thank you Beverly
  8. So does anyone know why scleroderma causes such fatigue? I have been shocked that even just with CREST syndrome there are so many more symptoms than the Acronyms. My RH says you just have CREST and he checks my hands and feet for further progression and asks if my skin is hardening anywhere? That's about it. He has never mentioned anything about meds for fatigue, does plaquenil really work and what are the side effects? Beverly
  9. Dear Michael, I'm so sorry, it's sounds as if you just had a visit. Mine is next week and it is always fifty/fifty on how I am going to walk out. Either feeling like a class project(because they really don't know what to do for you) or they just went to a conference and have heard something new for you to try(Ususally something you have allready read on the INTERNET). I completely believe in being an advocate for your health, who else is going to. How crazy is it to walk into a car dealer without some information? Communication is a must have in a Dr/patient relationship, maybe its time to find one that will listen as well as talk, they are out there. Good luck and I will let you know how mine goes next week. Beverly
  10. Thank you everyone, In regards to medication I have been on Prilosec for 3 years and nifedipine for a little over a year. I have noticed regrowth so there is hope. My husband and I both cut hair and its hard to see it go. It's truly a minor inconvenience, I am just learning about all the different affects scleroderma has on ones body. It's like a crazy mystery with no rhyme or reason why things happen when they do. Thank you ladies for your input and information. Take Care Beverly
  11. I am wondering if any of you ladies have had noticable thinning hair associated with Scleroderma? I am 33 and know it will happen eventually but it seems all of a sudden wham there's my scalp. Love to hear from you. Beverly
  12. Ok, I finally get to have an endoscopy. I would ignore the posts before because I never needed one. So all you veterans, what can I expect? what exactly are they looking for? And can I drive myself home? Thanks for all your help Beverly
  13. Thank you everyone for educating me there are so many medicines and very little time. Beverly PS how do you get your picture on your messages?
  14. Erin, I feel your pain, I have been on Prilosec for couple years now and if I'm correct it tends to be a cheaper prescription than some others. As long as I don't go to crazy with the fried food I do ok. I have a feeling that one day I will have to try something new, but my budget allows this, so I just watch what I eat. Instead of tums there are simethicone tabletsm, I use if I have had my meds and I had a little two many french fries. Good luck and don't wait to long to get help tummy pain is the worse. take care Beverly
  15. I was reading about the fatigue problem and quite a few people have suggested it. What is it and does it really help? Thanks Beverly :closedeyes:
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