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Everything posted by nan

  1. Sue, Thanks! That sound good. I am going to see Dr. Assil Saleh. Nan
  2. Thanks for your note. I go next Wednesday, the 27th. Nan
  3. Hi!, The Scleroderma center at Hopkins wouldn't see me. My bloodwork is within normal limits and I have no skin manifestations. I do have Raynaud's, increased capillaries in the nail bed , watermelon stomach, GERD, and horrible time swallowing. I am going to see Dr. Saleh at the Good Samaritan Hospital. It is where the rheumatology department is for Johns Hopkins. I go next Wednesday at 1 p.m. They wanted me to come today. They got in touch yesterday. Hopefully, she will be able to figure some things out. Nan
  4. No, I meant I posted a note for you on the message board under Social Security. I thought I have made it so my reply would go to you but it didn't, so it is mixed in with other people's reply to topic. Sorry for the confusion. Nan
  5. Janey, Thanks for giving me the link to Raynaud's. I will take a look. As far as GERD, right now I am eating 6 small meals a day. I try to watch what I eat. But at this point I feel lucky if I can get it down with no pain. I had an esophageal yeast infection last winter and it was so painful to eat that I lost 18 pounds. I am 5'81/2 inches and weigh 118. I feel so bloated and it hurts so much to swallow some times. I had a really bad spell last weekend . I go to see my GI on Friday. He essentially told me last time that if I have Scleroderma this is what I will have to deal with.
  6. Janey, Thanks for the information. Last Friday my blood pressure was 85 over? He couldn't find bottom number. It's usually about 60. I probably couldn't take medicine you took because I have a big problem with GERD. I am currently on three meds for that. Oh Well! Thanks, Nan
  7. Denelle, I know that when I had to take an extended period off from work I spoke with the Benefits/Compensation department and they were wonderful! I was a school teacher. I never made it back to work, but I do know that I couldn't have figured everything out without their assistance. Good Luck! Nan
  8. Helen, Welcome! I am so sorry to hear of how fast yours is progressing. I am somewhat new to this sight too. I am waiting to go to Johns Hopkins Hospital to see if they can figure out what is wrong with me. The fatigue is awful. I also have Raynaud's and lesions in my stomach that go along with Scleroderma. My rheumatologist also said that my nailfold capillaries give the appearance that an autoimmune disease is present. My bloodwork from Feb. came back within normal range. Who knows? I have a friend that lived in Australia for a bit and loved it. I will think good thoughts for
  9. Michelle, I have had to have several gum surgeries. I don't have a definite diagnosis yet. At one point I was weaklly positive for Sjogren's which causes dry mouth. My gums are receding, but I have never heard that it had anything to do with Scleroderma or Sjogren's. I am unable to take medication for my Raynaud's because most of the medicine causes the blood pressure to lower and mine is already 80/60. I have lesions in my stomach that spontaneously bleed. I am on 3 different medicines for that to keep me from becoming anemic again. Best of luck with your husband! Nan
  10. Jen, I didn't have to have a hearing for disability either. I applied and was denied the first time. I appealed it and was examined by one of their doctors and got it the second try. I feel very fortunate! Nan
  11. Hi, I posted information for you on Social Security sight. I thought that I had sent to you , but I messed up. Take Care! Nan
  12. That's great! I know when my disability came through it was such a relief! Nan
  13. Still try to get disability even if it is limited. When I got it I didn't even know that I might have scleroderma. I had Fibromyalgia, Raynaud's, watermelon stomach, Sjogren's and my right hand had shrunk because of hand surgery. If your primary care physician does strong enough wording you should have no trouble. Go for it!!!!!!!!!!!!!!! Nan
  14. Hi Sam, I hope your disability will come through for you. That's a long time to wait. I was very fortunate in getting my disability. I didn't even have to go through a hearing. I am so sorry for all you have had to go through. Best of luck this time! Nan
  15. Thanks, that sounds good! Nan
  16. Hi, Welcome! I am sorry that you are so sick right now. This site is wonderful! I just found it last week. I hope that you can find a good doctor to take care of you. Nan
  17. Hi, How long did it take you to get an appointment with Dr. Wigley? I called the main number and the person there is trying to set up an appointment. I am thinking I should call directly to Dr. Wigley's office. Could you let me know how you did it? Thanks, Nan
  18. Patty, I am so sorry to hear about your latest problem. I too have that problem. Usually an over-the counter fiber caplets(6 a day...you can send me a private message if you want to know the exact brand name) help, but lately they haven't been. When I had to get a colonoscopy last April I did the prep the day before and was supposed to have the test at 9 a.m. the next day. I hadn't even started having any bowel movements. The doctor gave me some more stuff and I finally was able to go to the bathroom and do the test the next day. I am going to have to go to my GI about my horrible h
  19. Pamela, DON"T LISTEN TO HIM!!!!!! I got disability and I didn't need an organ transplant. When I got disability this is what was on my application: Fibromyalgia, Raynaud's, GERD, Gastric Antral Vascular Ectasia, Sjogren's, arthritis, and degenerative joint disease. I had surgery on my right thumb and my right hand atrophied so badly that I don't have much strength in it. My primary care physician thinks that is why I got it. Who knows? I applied twice and it came through the second time with no problem. I didn't even use a lawyer or have to go before a judge. If your primary care p
  20. Mike, I have horrible acid reflux! My GI doctor has me on Protonix in the a.m. and 1 Prilosec in the p.m. I also take Ranitidine for breakthrough up to 2 a day. I think you might want to see a GI doctor if you don't already have one. Maybe you need something stronger than Prilosec. Nan
  21. Thanks to all for your notes of encouragement! I just got back from a wonderful rheumatologist's visit. He was so kind and compassionate today. He still thinks going to Hopkins is a great idea. I mentioned to him that my dermatologist said that my nailbeds have been damaged by Raynaud's. He looked and said you didn't have that before on all of your fingers. I told him that he was right. It was on my pinkie on my left hand in July, but now it has spread. He said that that can be indicative of autoimmune disease and that he definitely wants me to stay on Plaquenil. I asked did it have s
  22. Hi! My name is Nan. I just joined the forum last night and the first thing I did was to reply to Laura's problem. I too am in the midst of doctors trying to figure out what is wrong with me. In 1998 I was diagnosed with Fibromyalgia, Raynaud's, Sjogren's, GERD. In 2004 I had a major GI bleed and it was discovered that I have Gastric Antral Vascular Ectasia(watermelon stomach) which usually goes along with Scleroderma. Last January I got an esophageal yeast infection and I am still having trouble swallowing and horrible heartburn. I started seeing a new rheumatologist in February. All
  23. Katherine, I applied for disability in 2004. I was denied the first time and the second time the state had me examined by their examiner and the state disabillity and federal disability came through on the second try. My cousin is a lawyer and he said to wait until after the second try to get a lawyer to save money. I never had to use a lawyer. I also had disability insurance which was helpful until the disability came through. I was a school teacher with Chesterfield County and I had 18 years experience so I had many days and could have extended sick leave. Make sure that your doctor
  24. Laura, I am so sorry that you are going through all of that. I was diagnosed in 1998 with Fibromyalgia, Sjogren's Syndrome, and Raynaud's. In 2004 I had a major GI bleed and was diagnosed with Gastric Antral Vascular Ectasia( watermelon stomach) which is associated mainly with Scleroderma. Last winter I had an esophageal yeast infection and I have horrible times swallowing. When I had blood tested in 2003 I was positive for Sjogren's. When I had bloodwork done in February 2006 it was within normal limits for everything. I always thought that once you had an autoimmune disease you nev
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