Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About Kamlesh

  • Rank
    Senior Silver Member

Profile Information

  • Location
    Dublin, CA

Recent Profile Visitors

1,885 profile views
  1. To add little more: I do not have crohn or Celiac diseases, however I have Scleroderma which is impacting internal organs. Having said this, any opinion on Gluten and/or dairy free diet. I am trying Gluten free diet for six weeks without any noticeable improvements. I am vegetarian and have been follow Gluten free diet most of the time except few times tiny portion of wheat included in other gluten free items.
  2. Hello Friends, I do not have crohn or Celiac diseases, however I have Scleroderma which is impacting internal organs. Having said this, any opinion on Gluten and/or dairy free diet. I have tried Gluten free diet for six weeks without any noticeable improvements.
  3. Yes, it is due to Scleroderma. I have similar condition for over 10 years. Lips numb, can't open mouth completely, can't detect food particles on lips, and many more. I have not found any solution or ways to manage it.
  4. I have been having many GI issues due to Scleroderma. I was diagnosed with GI issues in 2006 for severe GERD and resulting pulmonary issues. It destroyed complete elasticity in my esophagus. I went through partial fundoplication in 2008, by about 2014, surgery had failed (This surgery does not provide permanent relief). Now, it cannot be repeated as it is very complicated surgery having major risk of going on feeder tube. Now, I am under treatment of several doctors as Scleroderma has severe impact on esophagus, vocal cord, lungs, stomach, small intestines, bladder, etc according to my doctors. I am ended up in disability and approved for SSDI. My one of the major issue is Neuropathy pain, I am in daily pain in 7-9 range out of 10. I have no external issues such skin tightening, ulcers, etc, but my all issues are internal according to my Rheumatologist and there is no treatment for it.
  5. I have severe acid reflux (Demister score 84, normal is 12-14). I am not candidate for any surgery. I had one 6 years ago and it worked very well, but it cannot be repeated due to many reasons. Due to esophagus damage, I do not feel acidity. I take two Pantoprazole and one Ranitidine everyday to keep acid reflux under some control. I try to take precaution such as inclined bed, keep weight under control, and manage food. I have very severe cough all day due to acid reflux damaging throat and esophagus and I am not finding any solution. I have 2 questions: 1) Anyone in similar condition, how do you manage acid reflux. 2) Any suggestion for controlling severe cough. I take cough lozenges 4-5 times a day which numbs throat for 30-60 minutes to give temporary relief. Thank you Kamlesh
  6. It takes more effort to prepare for endoscopy/colonoscopy than actual procedure. I am scheduled for both next week. Always, there is some risk involved with these procedures.
  7. I tend to disagree with New York Times article. Our blood is purified by our lungs and lungs remove all toxins from blood and purifies blood. Ancient Yoga or specifically what they call breathing exercises help remove toxins. Our blood takes out most of the toxins from every cell of body and removes these toxins by carrying blood to lungs. There are large number of studies done in India regarding this form of Yoga. I have pretty bad lung issues for over 20 years, and I have been able to stabilize my lungs at the same level.
  8. I had facial numbness 5-6 years before I was diagnosed with Scleroderma. I had facial numbness in 1998 and doctors went through many tests such as MS, spinal fluid, brain scans, etc and I was diagnosed with Scleroderma in 2004. So, I have scleroderma for 19 years. It is in remission-?, but it continues to do severe internal damage and there is no treatment for it.
  9. Hello, I continue to have problem. I have cleared cookies, reset all settings of chrome. Earlier, it used to keep me logged on, and when I come to this site, it won't even ask login and password. I tried even on other browser Firefox, and same thing. I have no issues with any other site. I can logon after resetting password. Not a big issue, but nuisance as it takes couple of more steps.
  10. Thank you Shelley for very insightful reply. Found an interesting site which suggests benefits of eliminating gluten can reduce inflammation for autoimmune disease patients. According to my son (who is pain management doctor living with us), unless one has Celiac disease, there is very little data for benefits of gluten diet, simply try reducing gluten input, as it is almost impossible to eliminate gluten completely.
  11. Every time I log on, it rejects my valid password and I ended up resetting my password. Today, it happened twice. Any suggestions?
  12. Hello All, Any experience with benefits of Gluten free diet in managing scleroderma?
  13. Hello All, Any one with Systemic sclerosis (SSc) having Neuropathy Pain? Can you please share your experience? I have severe Neuropathy pain in muscles of both legs. After trying so many medications including several control substances, my pain management doctor has found no viable solution. The best medications he found Gabapentin (up to 4800mg) along with Lamictal (Lamotrigine) up to 500mg which are very high dosage and cause severe drowsiness and dizziness. Appreciate any input.
  14. Yes, I have tried each individually without any success, and combination sometimes causes severe stomach pain. Either Scleroderma has damaged my guts so badly or ?
  15. Hi Judy, How difficult was the trial? Should I consider trial of Sacral Nerve Stimulator? Is trial data useful in making decision to have it installed? Thank you and your experience gives me significant insight. I need to make an habit to take Psyllum powder. My doctor has asked me to do trial and error and figure out which is correct dosages for: Cholestyramine (4-12 gms) Viberzy (1-2 tablets) Imodium (1-2 tablets) Last night, I took Cholestyramine (8 gms), Viberzy (2 tablets) and 1 Imodium. It was horrible night with extreme stomach pain. I also have small bowel obstruction and that makes situation even more difficult. Thank you and appreciate your insight.
  • Create New...