Kamlesh

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About Kamlesh

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    Dublin, CA

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Every time I log on, it rejects my valid password and I ended up resetting my password. Today, it happened twice. Any suggestions?
  6. Hello All, Any experience with benefits of Gluten free diet in managing scleroderma?
  7. 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.
  8. 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 ?
  9. 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.
  10. Can anyone share, how are they managing Bowel Incontinence? I have gone through several solution, and currently my GI doctor is trying: Cholestyramine (4-12 gms): Solidifies excess liver bile. Viberzy (1-2 tablets): This is used in Crohn disease to slow down flow in intestines to help solidifying Imodium: Further solidifying Has anyone gone through "sacral nerve stimulation or neuromodulation"? If so, did it help?
  11. Hello Friends, I am coming back after almost 2 years I have chosen to open a new topic as this is pretty broad topic instead of earlier on Bowel Incontinence. Scleroderma is such a complex autoimmune disease that nothing surprises me. I am dealing with this disease for last 18 years and was officially diagnosed 12 years ago. I have been very fortunate to have competent doctors in San Francisco Bay area and supported by University of California at San Francisco or UCSF which is a premium healthcare intuition. In my opinion, Scleroderma impacts a person at least three ways: External damage: skin, fingers, etc. This is most common impacts on scleroderma survivors. Internal damage: This is a complex form of scleroderma to diagnose and treat, according to my Rheumatologists locally as well as at UCSF, there is very little can be done for this. The organs impacted: lungs, stomach, liver, pancreas, intestine, bladder, etc. where organs lose flexibility. Some of the example I have gone through: Severe lung damage, acid reflux, poor digestion, weight loss, Fecal and Urine incontinence, Neuron damage. There can be significant Neuropathy damage which can cause severe pain, dizziness, drowsiness, as well as impacts on many areas described in item 2. Brain fails communicate with the organ/nerves in the area and organ malfunction occurs such as Neuropathy pain, fecal incontinence, depression etc I am sure there are many smarter experts there in the group.
  12. I have chosen to open a new topic as this is pretty broad topic.
  13. Scleroderma or other autoimmune diseases damage nerves and this causes communication failure between brain and many organs which is responsible for incontinence. Also, scleroderma is known to damage internal organs such as stomach issues causing acid reflux, bladder losing elasticity causing urine incontinence and urge to go frequently, neuropathy pain causing intolerable pain as inability of muscles to communicate with brain, etc., etc. this list can go very long. Even though sphincter muscles are normal, however bowel incontinence results from nerve damage. There are very few options, one is colostomy (intestine is connected to outside bag, which is extreme) or find ways to solidify stool. There are several medications are available for your GI doctor to try out. I know there is no easy or even difficult solution. Sometime psycho-therapy bio feedback may help. Good luck, this is difficult issue
  14. I am treating my heartburn to the maximum extent. I also visited UCSF, which is one of the top hospital. Even after treating heartburn to the full extent, my Demister score for acid reflux is 82 (normal person has 14 or less). My esophagus has no elasticity and my GI doctor has never seen such a poor Motility test, so he repeated again with same results..UCSF is recommending again (I went through in 2008 with great success) Partial Fundoplication surgery which tightens valve between Esophagus and stomach. My GI doctor would not recommend at all as tightening the valve may stop food going in stomach and causing it to feeding by feeding tube. I am told that Partial Fundoplication surgery can fail. Anyone can share their opinion? But in my case, acid reflux, is not top issue to manage, there are several others such as Neuropathy Pain and side effects of medication, etc.
  15. I have no choice, I am on Pantoprazole, 40mg twice a day + Ranitidine Tabs (which is 300mg prescription Zantec which is only 75mg over the counter). I have extreme acid reflux and I will not notice at all, except when I forget to take medications, my lungs will notice it.