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Everything posted by Bunky

  1. Hello Bruce and welcome! Wow, you and your wife have been through the ringer! I have no experience with rituxan, but there are others who may have. I sure hope you both find some answers soon. Take care, Bunky
  2. Dear Sweet Sadie, My love and best wishes are with you and your parents... XO Bunky
  3. Thank you all so much for your kind words. It has been a crazy, scary time, but my dad is much better, so thank goodness for that. My sister-in-law has a long road ahead, and my husband and I will do everything we can to help, but I've got to get myself more functional so I can be of help, so I really do appreciate the support and advice. I'm hoping for a more definite diagnosis, and tests to determine the extent of my internal involvement, and then of course a treatment plan. Thanks again, Bunky
  4. Hi Christy and welcome to our forums. This is a great place for support and information. We're glad you found us! Bunky
  5. Bunky

    Non Sclero

    Oh Sam, that is such wonderful news! Thank you for sharing it with us! XOXO Bunky
  6. Linda, So glad to hear you are home! Rest, rest, rest, and let us know when you are feeling better! Take care, Bunky
  7. Lisa, This is the first time I've read your post, and I am so grateful to you for doing all this! I do really hope you see some improvement (placebo or no placebo!). Thank you, thank you, thank you. Bunky
  8. Hi, here's an update on me. I finally am going to the sclero specialty clinic at the University of California San Francisco (UCSF) hospital on Monday. I was supposed to go last month, but my dad had a heart attack and then my sister-in-law was diagnosed with cancer, so I was out of town for 3 weeks. Right before all that (end of April) I had a sudden raise in blood pressure, ended up in the E.R. with a reaction to the blood pressure meds the on call doctor gave me, and I was supposed to see a cardiologist to make sure my kidneys and heart weren't being affected, but the cardiologists in my ar
  9. Hi Luvbnmom3, I've had similar symptoms in my abdomen and upper legs, where I think my phone is vibrating, but I don't have my phone. I have it most often in my lower abdomen. Its like a spasm I guess. I haven't mentioned it to anyone before, but I see a sclero specialist in a week, and I was planning to mention it then. With so many questions and weird symptoms to ask about, I won't even know where to start! Anyway, I hope you figure this out. Take care, Bunky
  10. Oh Sadie, what an awful way to spend the weekend! I am so glad to hear that you are home and doing a little better. Hang in there! Take care, Bunky
  11. Hello and welcome Lorna! We are very interested to know more about you, and if there is any way we can be of help, let us know. Take care, Bunky
  12. I have elbow splints for ulnar nerve compression that I wear at night. They were given to me by my hand orthopedist. They have helped a great deal. I have chosen not to have surgery, but to splint long term instead. If I forget to wear them for a while, the pain level and numbness increases. They are made to keep my elbows mostly straight. I sometimes where wrist splints when my hand/finger pain is bad. It seems to help somewhat, although I don't seem to have carpal tunnel. I hope this is helpful, Bunky
  13. My doctor has me walking 40 minutes a day 5 days a week, which most days are very doable, plus my dogs like it, but some days or weeks my fatigue level is too much, and I know I can't do it. I am working up to jogging, and then hoping to start running again. I've been asked to coach track next year, so I want to be able to run with the kids, not just to tell them what to do, but to show them. I have nine months to get to that place, so wish me luck! I'm determined that I can still do all the things I want to, with moderation and balance. Of course, with this disease I will probably get knocked
  14. Lucy, Barefut, Shelley, and Barbara, Thanks for your input. It gives me hope that maybe I can continue to protect my family with insurance. I will look into it. Lucy and Tru, I'm so sorry you are going through this disease without the support of your sons. Hang in there! Bunky
  15. So here's a loaded question--has anyone applied for life insurance AFTER being diagnosed with sclero? I have a term policy that will expire in a few years. I just assumed that would be it, I wouldn't be able to get insurance anymore. Bunky
  16. Margo, I'm 39 and I have one patch that is about 4 inches by 3 inches, but the rest are much smaller. The large patch was the first one, and about 4 months later I started getting more. They looked like red bruises when they first came out, and then slowly turned brown. When I was diagnosed with morphea I started researching and realized I had many symptoms of limited, but my doctor here doesn't feel comfortable giving me a diagnosis because she never heard of scleroderma until I was diagnosed with morphea, although she is very supportive. She was very glad I found an expert and we are bot
  17. Hi One, Welcome to our forum, this is a great place for info and support. I was diagnosed with morphea a little over a year ago. I also have Raynaud's, but didn't know that was what it was until after my diagnosis. Mine is mild but increasing in severity, and my nailbeds seem fine. I have negative ANA's, but I also have moderate reflux, mild telangiectasia, shortness of breath, and a few years ago had tight shiny skin on my hands, and curling fingers, but they have softened. My primary care doctor suspects limited scleroderma, but doesn't know enough about it to give me an actual diagnosis
  18. Happy Birthday to you, Happy Birthday to you, Happy Birthday Miss Sadie, Happy Birthday to you! (I hope you don't mind that I sing off tune.) Have a wonderful day! :) Bunky
  19. Thank you Celia and Peggy, I found out what was causing it all. I was low on Potassium. It made my blood pressure shoot up very high, so I finally went to the dr. They put me on a blood pressure med that I had a very bad reaction to, and ended up in the emergency room last night. That's where they discovered I was low on Potassium, gave me a pill, and the pains are gone! Now I just have to live through the yucky B.P. drug reaction. They say it will be out of my system by Friday afternoon. Thanks for all your help, Take care, Bunky
  20. Hello and welcome to our forum family! :) Bunky
  21. Tru, I'm sorry you are going through this. It has definitely been going on too long! You must be ready to scream. Hives are sooooo uncomfortable! Sending hugs and hope that you will get some relief soon. Let us know how it goes tonight. Take care, Bunky
  22. Hello Celia, Well its been a long time since I had growing pains, but this is different than anything I remember. The pains cover a small, very defined, shooting area deep inside the joints, usually last only a few seconds to a few minutes, and then move to another joint. Very weird. Thanks, Bunky
  23. A few months ago I started having intermittent shooting pains in my right ankle. This is a new type of pain for me. If you have ever had a blood gas taken from an artery, that is what it feels like. Very sharp, defined, shooting pain. I would get it every now and then, sometimes when I'd be having a Raynauds attack (it's always worse in my right foot). Now I've been getting the same type of pain in my some other joints--knee, elbows, wrists, fingers. And I've been having them much more often. I'm just wondering if anyone else has experienced this, or if I'm just a freak like my family would sa
  24. Sheryl, I do hope the therapy will help. I'm sorry you had a difficult time after the colonoscopy. Hopefully you'll be able to eat more after you rest. Take care, and let us know how P.T. goes. :) Bunky
  25. I'm sorry you are going through this pain. I hope you can find some relief soon. For me, like Sherion said, when my fibro is acting up I find heat can be the most comforting. Massage can hurt so much, but it can be relieving after its over. I use a heating pad, or rice bag, and drink hot tea. When my fibro was the most severe, the dr. prescribed a seratonin reuptake inhibitor, and it helped with overall pain management. I only took it for a short time, but I haven't had a relapse of that constant severe pain, only flares, since I went off of it, and it's been four years. Take care, Bunky
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