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About LoriAnn

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    South Dakota

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  1. Hi, Just wanted to let you know that I had my follow up Echo and it came back the same. My number was 42, so my rheumatologist is going to send me to a pulmonologist who specializes in pulmonary hypertension (PH). Anyone have any advice on what I should ask? Also, my bloodwork shows that the disease may be attacking my muscles now. I don't know what that means? Any information is appreciated. Thanks,
  2. Just want to say Thank you!!! for your replies. This information really helped. Craig that was a great explanation of PH. Wish I could come and join your support group. I will let you know how my echo goes on Monday. Thank you again
  3. Hi, I haven't been on for sometime. In July I had my yearly echo and PFT. My PFT was normal but my echo came back showing mild hypertension #'s between 35 and 40 (don't know what that means). My rheumatologist and I discussed and he advised my to wait another 6 months and redo the echo. Normally, my regular blood pressure is very low 90/60. In the last month my normal blood pressure has been around 130/70 which is very high for me. Reading info re: Pulmonary Hypertension has been very frightening and stressful. I have put on about 20 lbs since July (stress related). I have Crest Sclero, Raynauds and Lichens Sclerosis. Dec. 14th I have my follow up echo and just have some questions to ask anyone with Pulm. Hypertension. I know stress effects your normal blood pressure, but does it effect your Pulmonary Hypertension pressure which I understand is different from your normal blood pressure? I have a heavy feeling in my chest and have developed a dry cough is this part of PH? Is your normal blood pressure higher if you have PH? If anyone has any advice or questions you think I should ask, I would appreciate your input. Thanks Lori Ann
  4. Hi, Help!!! I have a recurring staph infection. It started 6 months ago with a rash around my ankles. Dr. thought it was an allergic reaction. It has been back every month and gets worse everytime, now it is moving up my calfs. The rash will go away when I am on antibiotics but comes right back when I get off of them. I now have bumps under the skin that won't go away. I am currently on levaquin and bactrim for 1 1/2 months. I have about 2 weeks left but the bumps are not going away. He says I will have to go to the infectious disease clinic next. Dr. is certain that the weaked immune system from slcero it causing the problem. Has anyone had any experience with this or have any ideas? Thanks for listening. Lori Ann
  5. I saw that this topic was back and wanted to give everyone an update. I went to my gyno and found out that I have a condition called Lichens Sclerosis. It is a skin condition that can cause irritation in the vaginal area. This was such a relief for me because my Dermatologist and rheumatologist could not come up with a cause for my discomfort. I had a biopsy done and the Lichens was confirmed. I used a steroid/cortisone cream 2 times a day for two months, once daily for 1 month and now once or twice a week or more often as needed. I have been able to resume normal intercourse (this made my hubby very happy). I would recommend a discussion with your gyno if you are having any of these symptoms: itching, painful intercourse or vaginal fissures. I was trying to treat it myself and waited 2 years in pain for no reason. I hope that this helps. Lori Ann P.S. I still do use lubrication my preference is Astroglide.
  6. Hi Lizzie Don't wait see your doctor. This happened to me on vacation and it turned out to be a staph infection. Mine started out as a small bite on my calf and the next day it was huge swollen and hot. It started to ooze a white puss. I went to the urgent care facility and they tested it and found out it was staph. I caught it before I got really sick but did need to take high dose antibiotics for about 10 days. They don't know why it happened but mine was not the dangerous type (resistant to antiobiotics) but it can still make you very sick from what the doctor told me. Still don't know if it has anything to do with sclero no one could tell me that. Let me know how you are doing? Take care Lori Ann
  7. Hi Patty, Thank god I am not alone. My whole experience with Sclero started because of my vertigo and nausea. My doctors. don't think it is related to sclero, but I had never had this before. doctor. suggested an over the counter med. but it didn't help. I don't have it all the time, but when I do it is very uncomfortable. I will talk with my doctor. next time about the med. you tried. I hope you find something that helps. Lori Ann
  8. Received diagnosis of Lichen Sclerosis yesterday. Dr. told me no sign of scleroderma on biopsy. I didn't even know they were looking for scleroderma. I thought that there were no tests for scleroderma. Gyno could not exlain to me what they were looking for just read what the pathologist reported. He says could just be a coincidence and not caused by sclero. Can they test skin for scleroderma? Can anyone explain this to me? Thanks for listening. Lori Ann P.S. Lichen symptoms started about same type as other sclero symptoms
  9. I went to see my new rheumatologist last week and I feel like I am starting all over again. I gave him my records from the old rheumatologist which stated his diagnosis of systemic scleroderma. The new rheumatologist says that he thinks that it might be limited instead. My old rheumatologist thought that I had systemic because of the anitibodies my body was creating and my full skin involvement. I hate the way they look at you in the beginning. It's like you are making this all up in your head. I went there with a whole list of the symptoms I have had since this all started a year or so ago. He then proceeds to tell me that some of these symptoms have nothing to do with the scleroderma. I have read from the sclero forms that others with sclero suffer these symptoms also. I live in South Dakota and we do not have a support group here and I know only one other person with Sclero. She recommended this doctor to me when my rheumatologist quit practicing. I am so frustrated with this diagnosis process. I would like to believe that I have limited but I am concerned that I may be wasting precious time if he is wrong. The day after I saw my rheumatologist I went to see a gyno for a pap. I have been suffering from severe vaginal dryness and irritation. I thought it was from Sjogerns. My gyno thinks I have Lichen Sclerosis. He did a biopsy (ouch!!!) I will get the results next Tuesday. He is 99% sure it is Lichen's but can't give me medication until he gets positive biopsy. In reading medical information Lichen's can be connected to Morphea sclero. I have not called my rheumatologist back to let him know this, as I want to wait until I get the test results back. I am more confused and frustated than ever. What do I have Systemic, Limited or Morphea???? Does anyone out there have Lichen's and if so what type of sclero do you have? Should I see another new rheumatologist for a 3rd opinion? (There are only 2 more in town.) Should I go to a bigger city? I am sorry I am rambling but I am so FRUSTRATED!!!! THANKS FOR LISTENING Lori Ann
  10. Thanks everyone for the your concern and the great information. The site of the infection is almost healed, but they tell me I have to go and have the doctor check to make sure that the infection did not get into my blood stream. I have any appointment for tomorrow. Since I have been diagnosed with Sclero I have had the weirdest medical problems. I hardly ever went to the doctor before and now it seems that I live there. I just wonder if the Sclero has effected my Immune system so much that I am vunerable to diseases that I never would have gotten before. Thanks again for your concern. It makes me feel so much better to talk to and read about people with the same problems. Lori Ann
  11. Our family went on a camping trip for vacation last week. I noticed on Friday my leg was a little swollen. I thought that it was a mesquito bite and didn't really pay any attention to it again until that night. By Friday night my calf was almost completely swollen, hard and very hot to the touch. I went home on Saturday and went to the weekend clinic. The Dr. took a culture, said that I had an infection and put me on some antibiotics. They called me on Monday and said that I had a staph infection and needed to put me on some high does antibiotics. They don't know what caused the infection and I have never had a staph infection before. I am wondering if this has anything to do with the sclero. I have an appt. with my new rheumatologist. on 8-13 but I have to see my general practitioner before that to make sure it isn't in my bloodstream. Has anyone else had a problem with Staph Infections?
  12. I am so glad this topic came up. I have been having the same problem and thought that maybe it was menopause. I have been doing some research and think that I have what they call vaginal fissure. They are like tears or cuts in the vaginal area. Does anyone else have this problem? I have an appointment to see the gyn. but I am open to any ideas. It is so great to be able to talk to people who understand. Thanks Lori
  13. Thank you everyone for all the information. I thought maybe I was crazy, because I to use to be able to fall asleep anytime anywhere. I can fall asleep when I am tired but I can't stay asleep. Use to take tylenol Pm but it doesn't seem to help anymore. The Amitriptyline I am taking now seems to be working, I feel so much more rested. Hope you can all find something that works for you. Thanks for listening. Lori Ann
  14. Nan, I just started Amitriptyline and slept about 18 hours the first day. What a difference. Thanks for the information. My doctor didn't think it had anything to do with the sclero, but I never had this problem before the sclero.
  15. Does anyone else suffer from severe insomnia? Is this is a symptom of Scleroderma? Thanks for listening!!! Lori Ann Dx: Diffuse Systemic Scleroderma
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