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Posts posted by Sheryl

  1. nhirzoiu, welcome to the ISN forums. You will find so much medical information in our medical section about Scleroderma and Sclerederma. I don't know anyone that has Buschke to have them write to you. Hopefully someone will see your post that has this diagnosis and write to you. Others will give you a welcome greeting and information you are seeking. I hope to see that you come in often with any question that are of concern to you.

  2. So sorry you had to miss out on this wonderful occasion Amanda. If it was because of your health or because of not getting an official invite being you are the step mom, either way it would/can hurt. There are many pains we endure during our lives all we can do is except what is and do the best with each and every situation as it comes along. I am happy to hear that your step son included you with words of love on his special day. I am glad you came on and voiced your thoughts. I have been away for 3 days so just returned and saw this post. I hope you were able to enjoy part of your day even if it was without close family members around.

  3. Amberjolie, it is good that you are finely getting somewhere with your ongoing illness. I hope you get unsolved questions answered before this doctor decides to retire. Do make sure your next doctor specializes in Scleroderma and associated diseases. Maybe you are better off not going to the same doctor as your husband. Why give him your money when he wasn't interested in your case in the first place. Sometimes it is conflicting for the doctors as you might ask about something related to you on a visit for your husband and he isn't getting paid for a dual visit. Things can be tricky for confidentiality between the doctor and each patient. Just some thoughts of mine, that you might want to think about before trying again to see your husbands doctor. I for one sure wouldn't want to go to the same doctor. There are some things I wouldn't want discussed between my doctor and husband in front of me or behind my back in the hallway.


  4. Janey you can have the Jicama. I have bought it and tried it on a couple occasions. It brought back memories of being in my Grandparents musty dirt floored cellar. It tasted to much like the dirt I tasted when it was thrown in the air when I was a kid. I am happy to find someone who likes that. Ha!

  5. Sweet, when I had nodules on my lungs I had to have CT's every 4 months then 2 times yearly for 4 years. I started with 2 or 3 and then had clusters of 4 or more on a couple occasions. I was lucky eventually they just went away. Or so I was told. Hopefully yours will go away also. Go to a pulmonary doctor if it will set your mind at ease. He can run similar tests and do your PFT's and get a better picture of what is going on. I will be thinking about you and hoping you aren't stressing yourself out to much. I know it can be hard not to get stressed. We already have so much on our platters to deal with. Let us know what your primary doctor wants you to do.

  6. Miocean, I too am happy you wake with a full bladder. Your kidney must be working fabulously. I wake several times a night with a full bladder. It is not because of getting a new kidney. It is because of diabetes or having a bladder suspension about 7 years back. Anyways, once is good, 3 or 4 times is hard on proper sleep patterns. Hey! We are alive and enjoying life. Be thankful.

  7. Another, nice video Amanda. I think it really helps when others can view videos and learn the different terms and how to pronounce the words related to Scleroderma. Reading words and then getting to hear how they are pronounced is great. Sjorgrens, Telangectasia,are often pronounced wrong as well as Raynauds. It would be awesome to make a quick video of the pronounciation of some of the terms for others to be able to communicate easily with their doctors. Keep up the great work.

  8. Summer, good luck on your surgery. Please post a few times in the next several months and let us know what happens. Some of us may be looking at having that surgery sometime and it is good to know some of the feelings or emotions of what goes on with people after surgery. Also, know how much better you will be feeling and any pitfalls. I just had my Colonoscopy a couple weeks ago. I had to do the two day cleansing as the doctor was looking closely for what was going on. Colitis, Diverticulosis and other issues with the Esophagus and Stomach. I found jello and beef and chicken broth in a can with the flavors of vegetables filled me the most and had the best taste. Just a bullion cube in hot water wasn't tasty. I made a pot of chicken soup a few days before and made sure I had plenty of extra broth to set aside so I could also have all the delicious flavors I like so I wouldn't feel like I was starving. G2 (Gatorade) has electrolytes in it so that will keep you from feeling weak or dizzy. Use only the Yellow or Lemon-lime flavor during this time period. I will also be thinking about you. Just a speck of news Venus Williams a great tennis player now has been diagnosed with autoimmune disease. She has been diagnosed with Sjorgrens.

  9. Shelley, you are a stitch. If you could use a heavier ball perhaps you might actually knock down more pins. Each pin weights about 3 1/2 pounds. It is great that you are having fun and actually can slide some pins into the gutter to get them to fall. You do make us appreciate everything life has to offer.


    Bowbec, I had a frozen shoulder a few years back. It was locked up pretty tight. My orthopedic doctor said it needed to be fixed via surgery. One of my girlfriends whom happens to be a therapist almost guaranteed me that if I went to a physical therapy facility that it could be fixed without surgery but would take about three months of 3 times a week visits. I chose the therapy and they were able to loosen it up almost to the point of being normal. It took a cortisone shot after 6 weeks to get things moving along without so much pain. After that I had one shot of something that went deeper and and gave me the ability to completely move my arm. I used bands and stretched as often as I could for about a year total. Now I almost forget what it was like since I am back to perfect mobility with that arm and shoulder. Laying on the floor with a broom stick or other type pole really helps you use both arms and bring the pole back as far as you can and the good arm helps you keep the broom level while you try to get it straight back over your head and to the floor. You won't be able to do this properly until you have had some physical therapy to get things moving along. They will use heat and electrical stimulation with a unit similar to a tens unit. Go get therapy girl. The longer you wait the longer it takes to fix.



  10. My reply dissapeared about half way through. Poof! I wonder how that happens to us occasionally.


    Anyways, Margaret I am happy to hear that Gareth came through the surgery quite well. Let him know that all your friends here on the ISN fourm think of him often and wish the best for him. I would wish for no pain but that is part and parcel of this disease or life in general I've come to understand.

  11. Susie, have they checked you for carpal tunnel syndrome? Sounds like the same tingling pain I had when I was diagnosed with Carpal tunnel. So many things are the same with both you and I. Keep us informed on your well being.


    Kamlesh, have you been doing more distance or inclines on your walks/runs. Different terrains can cause more pains than usual in your calf muscles. If you are over using all the different muscle groups in your legs, thighs, ankles, and calf, then you are going to get more pain than usual. If the blood isn't circulating properly or quick enough for fast recovery then you will have more pain than usual. Your doctor can send you to someone and they can measure blood flow, and many other things that might be developing in your legs. Neurontin really might help with some neuropathy's. If it isn't a neuropathy then other drugs might help with what is going on. I was on many prescriptions in the past for severe leg and calf pain. Some things work better depending on what might really be going on. With Raynaud's blood flow to the extremities can be hampered greatly. A few products to help leg cramps, pain, tingling, charlie horses and similar happenings are Trental, Pletal, even Norvasc that is used for many things, helps with blood flow to legs and fingers. A tens unit also sends little electrical charges into areas of pain to help with neuropathy 's if needed to help bring down pain. It is very important to get to the right physician to find out what really is going on. Keep track of how often you walk, how often the pain occurs after exercise or if it happens without any physical effort on your part. If the pain keeps you up at night and how extreme is the pain and exactly where to the touch does the pain actually occur. These are some of the questions my specialist asked me when I was having similar problems. I hope you start feeling better soon. Let us know what you find out. We have missed you here on the forums of late.

  12. Hello Mary and welcome to ISN forums. It sounds like you really should make an appointment with a Scleroderma specialist. Not just any rheumatologist will be able to properly care for your needs. Keep us informed on how your appointments go.

  13. Chopper, my gastroparesis now comes and goes in different intervals. Sometimes I get about 7 months without a major issue. My scleroderma diagnosis was made while on the surgical table preparing for a colonoscopy. My GI doctor is the one that informed me that colon and esophageal issues are a major part of scleroderma. I am glad to hear that your thyroid levels are in their proper ranges. You can have all kinds of problems when your thyroid gets out sync.

  14. Margaret, sorry to hear Gareth is having more issues to deal with. Have you looked into Coscochondritis can't remember how to spell it. Maybe his gastroenterologist can help you out. When I have the starting of bowel infections I hurt and have quite severe pain on either the upper left or upper right quadrant of my stomach. It is usually bacterial overgrowth or small bowel or small intestine pain. I hope you find out soon what is causing his pain.

  15. fragiledancer2, my paperwork doesn't say that I have to stop taking my Nexium.

    Maybe you might wish to call and double check your instructions. My instructions say to hold motrin,ibuprofen,aleve,advil or naprosyn for two days prior to procedure. It also tells me to hold my diabetic pills the morning of the procedure and to take them a few hours after procedure.

    If you are on Coumadin or Plavix then you are to check with nursing staff to see what protocols they wish to instruct you with.

    I have had this procedure a few times and I just make sure to eat things a few days before that I don't get severe heartburn pain when eating. I hope all goes well with your procedure. I have another month to wait for mine. The waiting is worse than just getting it over with.