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About Sally

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    Bronze Member

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  • Location
    Jupiter, Fl.
  1. Hi all. I have not posted in a long time, but decided this morning to get on the board and see what has been happening. I have had a lot of stress in my life lately, and think I have gone into denial that my Sclero is getting worse. I was amazed to see the topic of fecal incontinence, it has just started within the past few months, really thought it was my age(66), but now think it might be the Scleroderma, also having urinary incontinence, do you all think both of these conditions are part of Scleroderma? It is getting to the point I don't want to go anywhere, for fear it will happen, as I have no warning. Would love to hear from any of you, Love, Sally
  2. Hi Susi, I have RA very bad, also Raynauds, where can you go to get these massages you are referring to? Thanks. Sally
  3. I have been diagnosed with sine systemic sclrosis, and think it is very frustrating because you absolutely have no signs of any illness whatsoever, but unfortunately I do have many internal problems with Scleroderma, but we treat each one and learn to deal, good luck, Love, Sally
  4. thanks to all of you for your replies and info. I will follow up on every suggesttion. I did go to the urologist, and she didn't want a full bladder, just had me void and then did the test which is similar to an ultrasound, and said yur bladder is empty. Go Figure. But she did say something is going on as my urine showed blood and protein, which I am not thrilled about. Today I went for an ultrasound of the kidneys, will let you know what is happening, and again, thanks to all of you, Love, Sally
  5. Sam, I hope all goes well for you at the hearing, will be thinking of you, Love, Sally
  6. Sue, thanks for the suggestion, I will definately have them do blood work for the thyroid, never even thought about that, thanks to you all for your help, Love, Sally
  7. Thank you Heidi and Sweet for getting back to me so soon, I will check the website you sent, thanks. I also forgot to mention that I am having short term memory loss, that has me very concerned. I can't remember names, numbers, what day it is, get in the car and go somewhere and don't know why I am there, and everyone says my eyes look different. I went to the neurologist, she did Mri of brain and an EEG, all normal, next we are doing a sleep study for the memory and sleep issue, thinks they may be related. Thanks again for the help, appreciate all I can get, Love, Sally
  8. Hi, Sally here. I have several new symptons that have developed over the past four months. I wll explain them to you, and if anyone has had the same ones, or does anyone think they are Scleroderma related. I have been losing my balance, falling down if I bend over to pick some thing up, and bumping into things. Also, I want to sleep around the clock, I have been going to bed at eight each night, and can hardly get up by six, and that's an hour later than I should for work. I have always had fatigue with Scleroderma, but this is so different,I get to a point around One Oclock that I literaly can't keep my eyes open, if I try to eveything blurs. If I am able to I leave work and go home and sleep, I don't mean just dozing, sound asleep. Weekends I sleep almost the time. I went off several drugs that thought might be causing it, but so far I haven't seen any improvement. The last thing, I dont mean to ramble but I am so frustrated. My urine was coming out in very slow stream, took me forever to go, so the Dr. ordered me to come in for a test. The short of it is, I had to drink four 16 oz. glasses of water, the ultrasound was only showing 100 mg. and she wanted it at 150, but she said lets see how it looks. So I went into the bathroom and voided on a seat that catches the urine. I sat there until I was sure that I couldn't get one more drop out and course felt my bladder was empty. I go back into the room, and the Dr. says ok let's see where we are now. She moving the piece all around, again and again, and said something is dramaticaly wrong here. The ultrasound was reading at 330mg, which is a full bladder. Of cours I am going to A urologist on Monday, but does Scleroderma ever affect the bladder? Thanks for listening to me, if anyone has any ideas please share them with me. Love, Sally
  9. I have lost a ton of weight in the last four months, but I must say whenever they put me on prednisone, I rapidly gain weight, and didn't lose it for a long time. I don't react well to Prednisone or would go on it again, instead of the Methotrexate. I am not saying this is why you are gaining, just my experience, Good luck with losing the weight. Sally
  10. I have been getting the flu shot and pnemonia shot every year since I have been diagnosed, my rheumatologist insists on it. I have never had any side effects from them, nor have I had the flu or pnemonia since I have been getting them, I think we are react differently, I know of people that say they have gotten sick from them. What does your rheumatologist advise? Good luck, Sally
  11. Hi Jennifer, I also have absolutely no skin involment, but do have the deep wrinkles around the mouth and chin. Also the shape of my mouth and lips are so dramaticaly changed, I honestly don't know if this is from the Scleroderma or not. If you get any info on it please let me know, Good luck. Sally
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