Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by ozzy69

  1. Happy New Year Everyone! Yesterday I went for an upper GI Endoscopy, because I have been having problems with reflux. They also put a Bravo insert on my Esophagus to moniter the ph level for the next 48 hours. I was told I would not even know it was there. I had it done at 4:00. By 7:00 I was home and I ate and my esophagus started having spasms. It has been really painful. I finally took a pain pill and went to sleep. I woke up about 11:30 just in time to bring in the new year! I still had tons of spasms and alot of chest pain. Finally I just went back to sleep. This morning I woke up to the same spasms. I called the nurse, and she said the only thing they could do is take it out, but if I could handle it it was better to leave in. They are not as painful but I still have them whenever I drink or eat. Has anyone had the Bravo test done, and if so did they have any problems? Thanks, Nina
  2. Thanks Truman & Amanda, I have read about Calcinosis before but I was not sure if that what it was. Does the cold weather seem to bring them out more? Hope everyone had a Happy Holidays & a Happy New Years! Nina
  3. Happy Holidays everyone! I have been having problems with my right hand fingers ever since it has gotten cold again. My index finger and middle finger are a lot more swollen then my other fingers. I have about six bumps about the size of a pea on my index finger. it is sore & red.. Something when my Raynaud's is acting up the bumps show up white. Could this be Calcinosis? Does calcinosis only come with the crest? I was told by my doctor that she believes that I have diffused sclero. I have taken a couple pictures and I will post them. I do have a doctors appointment in Jan. Nina
  4. Hello Piperpetpete, I too get that pins/needles feeling in my feet and arms. I get it in my arms when I am laying down. I get it in my feet when I am sitting for more then 15 min. or when I first start exercising. It will last about 10 or 15 min. until my body gets warmed up. I do a dance exercise class and try to lift some weights each week. I have asked my doctor but I never really got a response. It is very annoying at times. Nina
  5. Hello Kathygirl, I too have interstitial cystitis (IC). They did a hydrodistention to comfirm it. I was put under for it and woke up in pain. That was in 2006. My main problem with the IC was pain. I still do have flares but have it under control for the most part. Hope you feel better! Nina
  6. Thanks so much for everyone replies. I am glad that I do have appointments with other doctors in the future. I really try to stay positive about everything and I am grateful that I am not getting worse at this point. I read some of the other post and I know that I could be doing worse. It just seems frustrating at time! Hugs, Nina
  7. Hi everyone, Yesterday I had my three month rheumatologist appointment. It has been a year since I have been diagnosed with Diffuse Sclero. I seem to be doing well. My lung function test have been good. My main problems are: 1. I keep a really red sore throat and have been having mouth sores. It feels like I have a lump in the bottom of my throat. 2. Pain in joints- mainly my ankle ( gives out when I walk down stairs or during certain activities), pains in wrist, and left hip. 3. Swelling of hands. ( worst in morning) 4. Bad Raynaud's in knee, feet, nose, hands. When my hands or feet get warm they are hot and swell 5. Right side pain under lower ribs ( doctor can't figure out why) 6. Night sweats 7. Feels like I have stuffy ears, some ringing 8. In the afternoons and early morning, I just do not feel well. I have read lots of books on sclero, and gotten lots of information from this site. My problem is at my appointment yesterday, I drove an hour for an appointment that when I left I felt like: Why did I even bother going to the appointment. I like my doctor and she is very nice but I get no explanation. She asked me what was going on and I explained that my ankle is going out and my wrists are hurting. All she said was okay. Then I explained about my throat. She looked and said that it was really red. I talked to her about the mouth sores and she said it could be from the acid reflux but I was on a high dose of meds already for that. We talked about getting a scope done on my throat. The appointment was over in about 10 minutes and I feeling like it was just a waste of time. I know with this disease that you have joint pain, but different things cause it. It would have been nice to hear some kind of educated guess on what is going on. Needless to say my doctor is leaving and going to another state so that was the last time I see her. I will be seeing the person that is over her on my next visit in February. I have also decided to seek an second opinion with Rafael Grau MD at the Indiana University Hospital at the Scleroderma and Raynaud's clinic. I have that appointment in January.
  8. Sandra, It is nice to meet you too! We do sound alot a like. My hips, wrist, and ankle have been much worse this weekend and I am wondering if it has something to do with the weather getting colder.The last six weeks I have not felt too bad and have stayed really active and now my joints are killing me.. Oh well something to talk to the doctor about in a couple of weeks..LOL I was told I had Sclero a little over a year ago. It took years doctors not sure what was wrong before I finally was told that I have sclero. My doctor seems to think I have more diffuse than limited but so far most of my tests have been coming out okay. Years ago I was told I have Fibromyalgia. I also have interstitial cystitis (IC) of the bladder. I have talked to my doctor before about night sweats and waking up but she never said much about it. I guess I will ask her again. Yes, my hip also hurts just to lay on it. Hugs, Nina
  9. Hi Sandra, You can count me in on the waking up at 3:00am. I have been doing it for about 6 months now.. It did stop for a couple weeks. I use to think something was going to happen at 3:00am that I should be a wake for..LOL I already take sleeping aids and I still wake up. I had an Hysterectomy at age 24, and then had my ovaries out 4 years ago. I have been on compound hormones for years now, so I have a hard time thinking mine is related to menopause. I also have pain in my ankles and wrist.. Sometimes my ankle hurts so bad I can barely walk on it. The next day I can jump on it and have no pain. My hip just started in the last week. It is very frustrating.. Hugs, Nina
  10. Hi Jackie, I have had chest pain for the last couple years. All my test come out fine, so I am still trying to figure out what causes it. I do think sometimes I have Esophagus spasms at times and that causes the pain. I hope this helps! Hugs, Nina
  11. Hi Amanda, I get a sore throat at least 2 weeks out of every month. Whenever I get I know that I am going to feel bad for the next couple days! I think of it as the beginning of my flare even though with sclero you don't have flares. My throat burns and stays red! Hugs, Nina
  12. Hi snowbird! The IC Network also has a lot of information. When my IC was really bad I was on their site everyday! Hope that helps... Nina
  13. Hi kathy, I just wanted to say that my blood work is speckled and nucleolar also. My ana is 1:1280. As of last July I was Scl-70 negative. I have tried the Methotrexate and did not have any results from it. I have heard about a lot of people it has helped. I hope you do well on it. Hugs, Nina
  14. Thank you so much for the updates! That is truly wonderful news!! Happy dance! Many hugs! Nina
  15. Hi Jaxs, I am so sorry that you are going through this. I know first hand how frustrating it can be. I too have a pain. Mine is under my right lower ribs and in my back. I have told the doctors about it for several years. It has been off & on for 3 years. My last ultrasound showed a small 3mm nonshadowing img. on my right Kidney. He stated he did not know if it was a stone and it said it should not be causing my pain. He left it at that. Lately it has been worse and just wears me out. My doctor gave me pain meds too but I hate taking them. I decided next time it gets really bad I am just going to go to the Emergency Room. Maybe having another doctor look at it will help. That was about a month ago. I was sad and so frustrated. I agree with everyone else that if something hurts there has to be a reason. the hard part is getting someone to listen. It wears on you. I hope you feel better soon! Hugs, Nina
  16. Hi Samanda, I too have interstitial cystitis (IC). I have been diagnosed for about three years now. It took the several doctors and finally my urologist found the interstitial cystitis. We thought it was my ovaries causing the pain, because I would get cyst. We removed my ovaries and I still had pain. Six months later I had a mass where my ovaries were and they I had to have surgery to remove the mass. They thought they cured me again, but I still had pain. Finally they sent me to a urologist and he did a hydrodistention on my bladder. They fill your bladder up and look in there. My bladder size was 500cc , and normal is 1000cc. There was a lot of bleeding and I was diagnosed with severe interstitial cystitis. For a year I went through tons of medications, bladder installs with Heparin and DMSO. I did better with the Heparin but the DMSO made my bladder worse. My bladder has gotten much better. I finally found a medication that makes my bladder much better. It took a year of trying many different things. When I get stressed my bladder does start hurting again. Certain foods will trigger a reaction in the bladder. I do get infection easy too. There is a great IC website. It is called the IC network. It helped with lots of the questions about IC. Hope this helps. Hugs, Nina
  17. That is exciting!! Please keep us updated! Hugs, Nina
  18. That is so funny! :) Count me in on the facelift!! Hugs, Nina
  19. Hi snowbird!! My Raynaud' do all the colors. They get white first, then purple/blue and then red. When it is hot they stay red and swollen. The blue purple is what they stay the longest. Sometimes hours! I do not have much pain, just numbness. Hugs Nina
  20. Hi Amanda, I took it for three months. I did not have any good results so my doctor took me off of it. I would get more depressed because it made me feel so run down all week. I have felt better mood wise since I have been off the last month.. Hugs, Nina
  21. I agree!! It is not like we don't have enough to deal with!! LOL
  22. Hi Carol, Getting angry was one of first respones. I use to run but had to stop because it causes pain in my bladder. My first year has not been as bad as I thought it would be. I have really bad Raynauds of hands, feet, knees, nose. I also have reflux, interstitial cystitis of the bladder, lots of joint pain and stiffness. I get really sore throat every 6 to 8 weeks or if I wear myself out too much. My hands started to swell more in the last 5 months. I have knots on the palm of my hands where some of my joints are. I also woke up about two weeks ago and could barely more my right pointer finger. It is more swollen. I have my lungs, and other tests done every 4 months. So far they have been ok. I get tested again in August. I have noticed changes over the year but nothing I can't deal with. My rheumatologist says I have diffuse scleroderma but is not 100% sure. I guess time will tell. I tried methotraxte for 12 weeks. It did not help with my joint pain or skin. My rheumatologist took me off it because I felt worse on it and I was having a lot of kidney pain. I exercise at least three times a week. I do a dance fitness program. It is fun and easy on my joints. I do some yoga, but it is harder. I feel better the next day when I do yoga. I try to walk about three miles at least twice a week. I lift some weights but nothing too heavy. My exercise has helped me a lot. When I can't exercise I notice I get so stiff I can barely walk. If I sit for any period of time I get really stiff. My arms are stiff and hurt at night. I think the thing that scares me the most is not being able to exercise and hurting more. I am 39 and the mother of three boys ages 16,18,20!! Hugs, Nina
  23. Hi Hippychik, Welcome! I am sorry to hear about your diagnosis but happy you found us. Everyone is great and they offer great support! You have already been given great advice. I think it a normal reaction for those that love us not to be great at talking about Sclero. It does get easier as time passes. I have three boys ages 16,18,20, and they didn't mention it much to me. At first I got offended but later I realized that is how they cope with it. My youngest son once said to me, " Now you know what is wrong with you does not mean you have to start acting sick". At first it hurt my feelings. Later I figured out what he meant. I have always been a strong willed person. After I was diagnosed, I was so upset and just gave in to my emotions and stop doing things that I used to enjoy. After he said that to me, I took his advice. I went back to being me, but I do know my limits. I do lots of research and keep a positive outlook. It has been almost a year since my diagnosis and mentally I am much better. Many Hugs, Nina
  24. Hi Carol , Welcome! Everyone has given you great advice. It is a is hard when you first find out. It has been almost a year for me and sometimes my fears of the worst still bother me. It has gotten a lot better! I do stay very active with exercise and my boys and that has helped me tons. I do find I have to pay attention more to my body when I over do it. Having a great doctor really helps! Many Hugs, Nina
  25. Hi Erin, I do have times when I get nausea. It happened before I was on the Methotrexate. The Methotrexate did make it worse. I took the pills. I heard the injection are not as bad. When I mentioned the nausea to my rheumatologist last year, she just stated it could be part of the Sclero or GERD. I was taken off the Methotrexate yesterday at my appointment. I had been on it about 12 weeks. She decided that it was not working for me. Hugs, Nina
  • Create New...