Jump to content
Happy Dance for Jo Frowde! Read more... ×
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by Kamlesh

  1. Kamlesh

    Sclerosis lips.

    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.
  2. 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.
  3. 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
  4. Kamlesh

    Upper Endoscopy/Colonoscopy

    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.
  5. Kamlesh

    Can You Sweat Out Toxins?

    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.
  6. Kamlesh

    Issues with password

    Every time I log on, it rejects my valid password and I ended up resetting my password. Today, it happened twice. Any suggestions?
  7. Kamlesh

    Face numbness? Anyone?

    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.
  8. Kamlesh

    Issues with password

    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.
  9. Kamlesh

    Gluten free diet

    Hello All, Any experience with benefits of Gluten free diet in managing scleroderma?
  10. Kamlesh

    Gluten free diet

    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. 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.
  12. Kamlesh

    Bowel incontinence

    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 ?
  13. Kamlesh

    Bowel incontinence

    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.
  14. Kamlesh

    Bowel incontinence

    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?
  15. 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.
  16. Kamlesh

    Bowel incontinence

    I have chosen to open a new topic as this is pretty broad topic.
  17. Kamlesh

    Bowel incontinence

    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
  18. 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.
  19. 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.
  20. Kamlesh

    Temperature control

    Hi Dimarzio, I go through ups and downs on both front mainly hot and cold, cannot figure it out when and why. Usually, at night, even in winter, I have fan on - I need air circulation otherwise I feel too hot to sleep. In the morning, I may turn on heat or fireplace for 10-15 minutes to warm up. It is a minor issue, and my doctors have no clue, so I ignore it. Take care.
  21. Kamlesh

    Scleroderma Internal Damage

    Hello All, Thank you. I hope there will be some innovations in treating Neuropathy pain. It is battle between pain relief and side effects. Intensity and unpredictability of pain reminds me of dialogue from 'Castaway' starred by Tom Hanks -- I have to keep breathing, I do not know what tomorrow will bring. It is an excellent movie
  22. Hello Friends, Visiting after several months - sorry about it, but I always remembered this group as it has been tremendously supportive. According to my Rheumatologist, my scleroderma is damaging my internal organs. I had gone through partial fundoplication surgery in 2008 and it has failed as stitches taken to tighten valve between stomach and esophagus are broken and my acid reflux is going through roof. Visiting to UCSF and they are recommending the surgery again. My lung volume has gone down significantly and that has alarmed UCSF. UCSF (University of California at San Francisco) is one of the top hospitals. Three doctors went through my visit, studied all documents as far as 2008. As per their recommendation going through testing (Manometry, PH probe, CT scan, Fluroscopy, blood tests, etc.) But, my primary issues are extreme Neuropathy pain and my pain management specialist has run out of options, and digestive system disorder. I am on long term disability and do not see any signs to come off it. Best wishes to all friends.
  23. Hello All, I am coming back after a while, but never forgot any of you. Still, continue to struggle with impacts of scleroderma to internal organs. Under care of half a dozen very competent doctors. My skin is normal, but according to my doctors scleroderma is responsible for damaging many internal organs, Neuropathy pain which is extreme (almost 8-9 out of scale of 10) several days a week, scleroderma is producing scar tissues in intestines, blocking small bowl obstructions, my 2008 partial fundoplication surgery is no longer working and my acid reflux has shoot up to almost highest level, etc. Any one with Neuropathy pain? I have exhausted all medications for Neuropathy pain and last few which provide some relief are extremely toxic with so many serious side effects, too many serious ones to list. But, without those I will be always in extreme pain. But, I am happy for what life has given me. Simply enjoy when I am well and I have developed ability to manage pain when I am in pain. My meditations and faith have given me strength. Thank you all for listening. Looking forward joining some of the chats - I am in west coast.
  24. Kamlesh

    Gareth update

    Hi Margaret, I hope Gareth feels better. I am sure the whole procedure will be painful to him as well as you. Please take care.
  25. Kamlesh

    Coming back after a while

    Hello Judyt, Shelley and others, Thank you I seem to have most of the problems, Judyt, that you have. My esophagus to entire digestive system has slowed down. I had severe acidity before 2008 with Demister score 72 (Normal is around less than 14). Most of the surgeons declined surgery. Finally, I had partial fundoplication done at UCSF and my Demister score dropped to just 2. Now my surgery has failed as stomach wrapped around esophagus loses elasticity, and my Demister score has jumped to 80. The consequence of the high acidity is further damaging esophagus and lungs. I am constantly coughing, but no solution. My neuropathy pain in both legs jumps to extreme every day, on top of that I developed sciatica nerve pain in right leg. These are only some of the problems to list. I am not sure any of the symptoms are reversible. Thank you for listening/reading Kamlesh