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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Skin Fibrosis

    Hello Denise How annoying! :angry: If you can't get more info over the phone and have to wait until February it's going to be difficult for you both. There's little worse than not knowing and only having half the info because our mind love to fill in the blanks. Beware of too much internet searching as 1) you are not yet certain what you are dealing with and 2) a lot, particularly relating to scleroderma, can be inflammatory and lots of us here have scared ourselves witless reading it. I hope you can get more info prior to Feb, if not try not to worry because it has no effect over the outcome. If it does turn out to be sclero be assured that it's not the end of the road and you will get terrific support here. Take care. Amanda
  2. My esophageal story

    Hello Mando I think Jeannie made a very pertinent point, why not sclero? On what basis is the doctor dismissing this, you have a collection of symptoms consistent with sclero. You need to make him give an account for his decision, clinical reasons why it's not sclero. "It just isn't," is not an answer. I hope you get an answer soon. Amanda
  3. Back on the good stuff

    Thanks Judy :) If you're laughing you can't be crying Good things for you too. :D Amanda
  4. Back on the good stuff

    Hello Lizzie Sorry you have been so ill and that you have to stop taking a drug that was helping you. You are obviously one of the "one in a hundred thousand" people who get the weird and unusual side effects. My mother once took a medication that had a rare side effect of "black tongue", no idea what that was and she didn't get it so my curiosity was never satisfied, how selfish can you get! Take care. Amanda
  5. Back on the good stuff

    Hello Llbipp Thanks for the encouragement. I don't know anything about your illness but am glad cellcept is a better drug for you and that you found the cause of your migraines and were able to get rid of them. Having good doctors is half the battle and it's great when a doctor helps to alliveiate side effects. Take care. Amanda
  6. Back on the good stuff

    Hello Pdfangels Welcome and sorry things are so hard right now, the beginning is the worse bit. You're adjusting to a progressive illness and it takes time. Allow yourself to express your real feelings, although you are a naturally positive person don't just smile and pretend all is well. To move on to the next phase, and you will, get the most out of this one. Cry, scream and shout as you need to, ask for and accept help and post on this forum. There is always someone here who has been there, done that, got the T shirt so you need not be alone in your experience. Please also talk to your doctor about pain relief because it is available. Constant pain wears on even the most positive of us. In addition trying to communicate with those around you what it's like to be in pain day in and day out can be frustrating when they (thankfully) have no idea what it is actually like. Oh so many here on this forum do! Cellcept takes a few months to kick in and meantime your disease is still active, if cellcept works for you it will work well. Ask all your questions of your doctor and maybe here and educate yourself regarding scleroderma as forwarned is forearmed BUT get your info here as it is accurate and not inflammatory as so much on the internet can be. Many have scared themselves witless reading elsewhere! All in all you are now in a place you would not choose to be in nevertheless you are. This does not mean it's the end of the road because you will move forward it just takes time. Your life may be very different from what you thought it would be but it can still be a great life full of hope, joy, love and all those gooey good things. Just give yourself time to adjust your horizons, don't rush it and remember your are not alone in this, your ISN family is here for you. Take care and feel free to pm me if you wish. Amanda
  7. New Story Peggy: CREST and Raynaud's

    I've just read Peggy's story the sign off for which is "it isn't over till the fat lady sings and I'm not singing yet". Love it. Amanda
  8. Lichen sclerosus & Planus?

    Hello Kadee Welcome and go to the doctor! You have not done anything wrong and have nothing to feel bad about. Do not continue to suffer unnecessarily when relief could just be a prescription away and when you get that relief you'll wonder why you waited so long. Remember embarrassing to you is bread and butter to the doctor who's seen it all before, the symptom if not the cause. Take care. Amanda
  9. Miralax

    I haven't used the laxative in question but did take a particular one once in the morning instead of night and found as a result it worked much more quickly. About 5 hours as opposed to overhight. Why I don't know, maybe activity plays a part? Amanda
  10. Walking on toes with scleroderma

    Hello Ashu I am 40, have diffuse SSc and in the early stages walked on my toes because it was less painful than using the whole foot. Now I have foot padding loss and flexability loss in the ankles so I can't walk on the ball of my foot anymore. Could it be a comfort issue for your daughter? Take care. Amanda
  11. My Friend Donna Savage

    Dear Razz I wondered how things were for you as you have not posted for awhile and I am sorry that it's a difficult time. I think your assessment of the situation is a very brave one and your positivity commendable. I must admit no pain is a mighty attractive scenario and there's a lot to be said for it, I am sorry that grief is the result for you and Donna's family. Take care. Amanda
  12. Raynaud's at work

    Hot dog would be a better nurse than Hot Hannah! I wonder if it's a "germ" issue with the clothing, nevertheless asking to "inspect" someone's under garments is just plain weird. Some people have control issues and I wonder if this is hers. Ask her to spend the day bundled up so she knows how uncomfortable it can be to be subjected to a temperature not compatible with your body. Amanda
  13. Itching and new member intro...HI!

    Hello Eos Welcome to the family, much like our real ones it may not be one we'd necessarily choose! It's a lot to take in, offically moving from the world of well to the world of hurt but at least you know why and what you're dealing with. The itching :angry: was one of my first symptoms an I remember my husband lotioning my legs at 3a.m. trying but not getting any relief. As we had no idea of the cause the creams were all wrong. I have skin involvement where the itching was and still is and per my rheumatologist it goes when the sclero becomes inactive but as with eveyrthing to do with this disease no one knows for sure and no one can predict to a medical certainty how it will pan out. Antihistamines can help along with creams applied frequently, and forgo run of the mill soaps etc. I found that keeping the area cool/cold helped and I have also found that Cellcept helped my itching. Prednisilone did but the side effects were too high a price to pay. Ranitidine is supposed to help as well, I know it's a reflux drug but itch control is a pleasant side effect so I'm told. In my opinion itching is an underrated symptom. B) Keep posting and take care. Amanda
  14. Very Frustrated, Could Use Some Direction

    Hello Stef I've just read this thread, please let me fire him, please, please!! Amanda
  15. Systemic Sclerosis

    Hello Evelyn Welcome to the forum and sorry that you have had to contend with grief and illness simotaneously. Pain is part of sclero and waxes and wanes, I still have painful feet and at times dread the thought of standing up but it is better than in the beginning. I don't know if you're connected with the Royal Free but they have sclero specialists there and every time I go I resist the temptation to call out in the waiting area "Mexican wave" so I can immediately spot the other sclero sufferers, they're the ones who can't get up or whose hands waved look like a clip from a Wallace and Gromit claymation. The Scleroderma Society in the UK has various groups that meet throughout the UK and I host one. Log onto their website if you're interested or pm me for more info. Who ever you stay in contact with staying in contact with other sclero sufferers is invaluable. Take care. Amanda PS How did you find the Iloprost? I hated it!
  16. New Here, need some help :)

    Jeannie, you crack me up...hired help...love it. Isn't it such a shame that we get so desperate for a diagnosis that any diagnosis is better than no diagnosis. I knew what sclreo looked like and did to a person when the rheumatologist gave me the diagnosis nevertheless I was relieved to have a name for my illness. Naming it means it can be contented with, treated, investigated and lived with. Gretalclyde I hope you soon get a firm diagnosis, with sclero a diagnosis should be base on symptoms as well as blood work and tests rather than any one in isolation. You can have SSc and a negative ANA as I do and did at diagnosis. When it comes to dealing with the doctors remember you're acting in your own best interest, if that's a doctoring faux pas too bad...:angry:...with some doctors you'd be better off with a plummer! Take care and keep going. Amanda
  17. Newbie

    Hello Deedles, Welcome to this forum that will support in any way it can. That place of limbo, undiagnosedville, is a hard place to be, all unexplained, weird symptoms, pain, fear and confusion. Many on this forum finally checked outta the place riding as fast as they could on their diagnosis. Unfortunately sometimes diagnosis only brings its own uncertainties and questions but you've already trained to deal with them. You might find it helpful to take another person with you to your January appointment as another set of ears will hear what you miss. It can also be helpful to write down any questions you may have so you remember them all. Please let us know how it goes and take care. Whatever the outcome there's help for you here. Amanda
  18. Dental

    Hello Helen I have not been to the dentist in approx 10 years, I have only had sclero for 17 months so clearly I HATE dentists. Let me know how you get on as I have to get to one sooner or later. I would echo was Shelley said in a less eloquent manner, don't take any guff. YOU are paying, YOU are the patient, it's YOUR mouth and YOUR pain. Don't suffer unnecessarily because you don't want to confront the dentist, YOU pay so he works for YOU! Hope the capital effect is empowering ya! Take care. Amanda
  19. Newly Diagnosed Scleroderma

    Hello Honey Welcome to the forum and sorry you have scleroderma. :angry: I have diffuse SSc. I took 7.5mg of prednisilone/prednisone for a few months, prescribed by a sclero rheumatologist, for itching and erythromelalgia. I stopped taking it, tapered off, because of the weight gain, although small it was continuous. Once off it I realised that it had effected my mood, made me irritable, short tempered etc whilst I was on it. It did work though, the itching was minimal as were the erythromelalgia symptoms, however, the overall side effects negated any benefit in the long run. In addition to which, despite being on a low dose, I had to taper off over two weeks during which I had headaches and felt depressed! It's a powerful drug, even at a low dose. Speak to your rheumatologist and decide, come back for more info/advice whenever you need. Take care. Amanda
  20. New to board; have questions

    What may help your wife's emotional well being is if she joins in here and has what's known as a rant as she's among people who have ranted because of ulcers and other sclero goodies themselves. It'a a safe place to be and she may pick up better ways of managing/treating the ulcers. Amanda
  21. I'm pregnant!

    Ana I am soooooooo happy this has finally happened for you! Answers come and here's yours! I did ask for lots o babies so beware! You and your husband can build a beautiful family now, a great foundation of two people in love and committed can do anything, even change that nappy, you know the one with the green stuff in it. Hey do you think you'll get any weird pregnancy stuff like smells you must have (one lady sniffed rubber gloves) or must not have (my sister could not stand the smell of the grill after use, walked through kitchen, smelled it, ran upstairs to puke but tripped on last step and barffed on landing) or weird cravings?Please tell us it all so we can be virtual aunties Enjoy every moment of it and I am so happy for you both. :) :) Love Amanda
  22. Natural methods to relieve pain

    Barefut Making one with the pain, hilarious! Ignoring the pain makes it very VERY angry! :angry: In this country they're running a really annoying commercial for the anti plague benefits of a certain chewing gum. It involves an ordinary man, dressed in white, fighting the air as you can't see the plaque he's really fighting while other weirdos play small musical instruments to the tune of fighting the air. We could do this for pain, we could all dress in white jackets, the ones that strap up at the back, and beat the invisible pain, cathartic! Anyone play musical instruments? We could syncronise a multi continental pain bashing ceremony. Transport home would be provided courtesy of the local asylums. Amanda
  23. New to board; have questions

    Hello Mark Welcome to you and hello to your wife. Things can get worse during a flare and then get better again, to quote, it's the nature of the disease to wax and wane. Obviously check these changes with a sclero doctor to make sure any meds that need adjusting/altered are. I find it interesting, on a purely selfish note, that you mention migraine as a worsening sympton because I have found the same thing now for over 6 months although migraine isn't a recognised sclero symptom/issue. Strange. <_< Take care. Amanda
  24. Started cellcept

    Hello Ardis I was taking cellcept for 13 months @2grams a day and it improved my skin. Initially I had a bit of nausea but can't be certain in was the cellcept as I was also taking strong pain meds at the time. I would say overall the benefits outweighed any side effects. However I started getting frequent headaches/migraines for some 6 months and in desperation stopped the cellcept although my rheumatologist was sure it was not the cause. I have been off it now for 4 weeks and the jury's still out regarding the migraines but I am sure it was causing the headaches that came on every couple of days and were bad enough to send me to bed. I assume this based on the fact that they have stopped. Of course at some point soon I will go back on it to make sure this is no coinsidence. I was only ill with a virus once whilst on cellcept, less frequent than when not on it and no infections. Cellcept is touted as the most well tolerated immuno suppressant and most people's posts about it have been positive. I suppose you've got nothing to loose and everything to gain by trying it as if you don't like it just stop it, you'll be no worse off just back where you started. Hope this helps and take care. Amanda
  25. New to Board - Question on RNP blood work

    Hello Jenn Welcome and hello! I can't add to what's already been said info wise, however, wanted to suggest that you don't take what you read on the internet (apart from this site) too seriously. You don't yet have a diagnosis and a lot of the stuff can be worse case scenario, all doom and gloom. There's so much information but only some of it will apply to you and until you get a diagnosis it's hard to determine what info to absorb and what to disregard. Mind you even with a diagnosis there's no certainty about how a disease will progress! You'll always get good info here based on experience and accurate up to date material. Take care. Amanda