Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by March

  1. There are known foods that are inflammatory and many people are sensitive to gluten and dairy without necessarily knowing it. I would rather find out if certain food groups are causing my autoimmune diseases. My niece who has multiple sclerosis has managed to halt and in some areas reverse the disease with diet and alternative medicine. Thank you for your advice - my doctor is very supportive of healing via nutrition. I aim to get off all the Rx I am on as the liver takes a beating processing them.
  2. Hello! I have gastroparesis along with other "gifts" from scleroderma. I am about 12 pounds from a feeding tube so I am asking if anyone with my condition has been successful using the autoimmune protocol and acupuncture. I tried the autoimmune protocol for 10 days but my weight dropped very fast so I had to stop. The doctors put me on Glucerna as a means of fattening me up but that stuff is filled with chemicals and fillers I don't want. The whole point of AIP was to eliminate dairy, gluten, eggs and other things for 30 days or more and then slowly introduce them back one at a time to see if you're sensitive to it. They talk about "leaky gut syndrome" and that autoimmune diseases can be helped by good nutrition alone. Also I have been advised that acupuncture has been shown to help with gut problems. Most of the research I have done shows glowing results but all are selling a book, videos, seminars, etc. so I am somewhat skeptical that this is a whole new money making industry on the backs of people with conditions like gastroparesis. Feedback would be much appreciated!
  3. :emoticons-yes: You all are THE BEST!! Thanks so much for the great advice and encouragement. It was good to have what my local doctor diagnosed validated by scleroderma experts. Does anyone know what a leaky heart valve is? Is this one of those things that most everyone has? That was the only thing of significance that was found on the echocardiogram. I wonder if I am getting too paranoid.... :blink: I am feeling somewhat guilty, almost disappointed that my condition is not worse...how dumb is that? Maybe I am a touch depressed. I will see my primary care physician Tuesday and hopefully, she can put all the pieces together for me. Having seen so many specialists for so many different problems is really getting old. Please forgive me for my pity party.
  4. :happy1-by-lisa-volz: Greetings friends, I have returned from Johns Hopkins today and am pleased to report that, as expected, the care from Dr. Boin was excellent. Most all of my fears are unwarranted with regard to Scleroderma. He confirmed the diagnosis of limited scleroderma and there is no organ involvment as evidenced by PFT, chest x-ray and echo-cardiogram. The doctor conducted a head to toe exam. The esophagitis, diarrhea, reflux do not appear to be connected with the Scleroderma. The doctor felt the fatigue (my worst problem) and brain fog are not from this disease. This is good news and bad news! While at Johns Hopkins, I saw my Endocrinologist and we discussed the fact that my blood sugars are not being controlled. It would appear that whatever mechanism that was in place prior to my stomach surgery is not working to control the flood of insulin (over reaction of my pancreas) when my body tries to process sugars. He and my local Endocrinologist feel that the fatigue is a combination of the chronic diseases I have along with the blood sugar highs and lows. An option, but one I really don't want, is to have the rest of my pancreas removed and become a diabetic. Meanwhile, the doctors struggle with how to manage my blood glucose. Many thanks to all of you for your good wishes and advice. I read extensively from this website and others to become educated. While limited scleroderma is not a bed or roses, for now at least, it appears to be stable. This is my hope for all: May we be granted the serenity to accept the things we cannot change, Courage to change the things we can, And wisdom to know the difference.
  5. I know when urine is dark in color that usually means that your fluid intake is too low. My urine wasn't concentrated...I am starting to feel like a hypochondriac. :emoticon-bang-head: I am soooooooooooo anxious to walk out of the Scleroderma clinic on Tuesday and know what is going on and what the plan of action will be. My eyes are getting crossed from all the reading I've been doing since I am home on short term disability.
  6. :VeryHappy: Hi Patty! I am a former New Yorker!! Moved to VA back in 1987. How's the weather? Thanks for your good wishes and the info on Johns Hopkins. I will see Dr. Boin at Bayview. What is kind of preliminary exam do they do there? Anyone know if red marks, about the size of a pinky tip on the legs mean anything? I had one for a year or more and just noticed a second one. It looks like a lesion whose scab is off but doesn't heal. I've had a rash on my legs for about 4 years but the doctors all dismissed it as a dry skin condition. One more thing, for years on and off I had frank blood like a red line. From time to time there would be some blood in the toilet or on the tissue but very little. I was scoped and there was nothing remarkable - no hemorrhoids but he did find an anal ulcer. No pain though. Do you think this is "just one of those things"? Sorry for the graphic content but inquiring minds want to know!! :mellow:
  7. Hi Summer, I am curious about your UTI's. Same thing with me - absolutely no symptoms of anything wrong but both the Rheumatologist and Internist (at different times within a few months)said I had a UTI. The second time I took the antibiotics. I have noticed for quite a while (maybe 9 months or so) that my urine has a very strong odor - not the usual odor. Have you noticed anything like that? Are UTI's common with scleroderma? As a rule I don't get UTI's - may have had 2 in my entire 60 years. Thanks :rolleyes:
  8. :yawn: The fatigue is my biggest problem right now. After 4 major surgeries in 4 years and whatever is going on with the Scleroderma, my get up and go, got up and went! Getting more rest now that I am not working is helping but boy oh boy do I feel guilty! I am (or was) one of those A type personalities but now I don't want to do much of anything. I get to feeling kind of spacey - light headed a bit - and I am starting to wonder if I am imagining it or not. No doctors gave me anything for the fatigue - I had been anemic after the last surgery but the extra iron fixed that. Does the Procardia help with the tiredness? The doctor prescribe it for the Raynaud's but since it is not happening that often, I declined. How on earth can you tell what is or isn't working when you are on a bunch of meds? I am mall walking with my hubby three times a week - he does 4 one mile laps and I do two right now. I used to tell the doctors "I am allergic to exercise, I break out in a sweat". It doesn't hurt to walk but I do get tired easily - tired where all I have to do is close my eyes and I am asleep. Best wishes to all and thanks for letting me pick your brains!! B)
  9. :D Thanks for the warm welcome! Sorry about the long list of events, seems crazy but I think all these things are somehow connected. Thanks for the suggestions about my medical records...needless to say they are huge. I will contact those doctors who have treated me and get the records faxed to Hopkins. Will report back with what I find out. In the meantime, I am having an echo-cardiogram, pulmonary function tests and chest x-ray. I think the doctor has my baseline so I guess they are going to compare? Hopkins wanted the tests done prior to my appointment. My last echo-cardiogram was in 2006. I guess it was okay. I really like this forum - thank all of you!
  10. I am very happy to have found this forum!! I have read so much on the WWW and it is good to connect with others in the same or similar boat. Okay - here goes my story... About 25 years ago developed Raynaud's in my hands (I was about 34 and a heavy smoker). I quit smoking but no change in the hands. Sometime in 1998 or so, I developed double vision and was referred for a complete work up. Nothing of significance was found except a high ANA which the specialist said to keep an eye on. Started back smoking, quit, started again...The double vision went on for a year or two and finally a Pediatric Opthamologist gave me a Rx for coke bottle glasses and the double vision resolved. Put on a lot of weight after quitting smoking finally (80 extra pounds). Got bi-lateral carpal tunnel surgery. Fingers were swollen and painful - went to Rheumatologist who diagnosed me with mixed connective tissue disorder. Got shots in my finger joints (ouch!) on and off for about two years. Had Roux-en-y Gastric bypass (2005) - lost all the extra weight but knees still hurt. Go to Orthopedic surgeon(2006)and x-ray shows no cartilage in left hip and not too much in right hip. Got left total hip replacement and was told that my right knee would be better now. It wasn't so got right hip replaced (2007). The GERD went away (or so I thought)after the weight was gone. Routine testing showed Hypothyroidism (runs in the family) got meds. Eating all sorts of foods and occasionally getting "dumping syndrome" (high blood sugar followed by dumping of insulin resulting in low blood sugar). One evening went to sleep early feeling shaky and later when my husband came in, I was having a seizure, foaming at the mouth, unresponsive and making a terrible gutteral sound. He calls 911 and I am taken to the ER. My blood sugar was 21, temp 71 and bp was depressed. The glucose bought me back. Started seeing an Endocrinologist because episodes kept happening. Lots of tests - referred to Johns Hopkins for evaluation - have partial Pancreatomy and Spleenectomy (2008). Blood sugar seems to stabilize but fatigue is overwhelming. Food starts to "get stuck" and have to vomit for relief - even cottage cheese gets stuck at times. Gastro doctor scopes top and bottom - find Epstein Barr virus, diverticular and esophagitis. Stess at work, fall asleep in car at lunch time, dragging throughout the day. primary care physician diagnoses Mono says that is why I am so tired. Months pass and I am really dragging and blood sugar drops if carbs are too high. Rheumatologist says I have Limited Scleroderma but also tested positive for diffuse. Got an appointment at Johns Hopkins in two weeks to see what's what. Am out of work on short term disability and am resting. Feel pretty good. Any idea if all this stuff is related? Aches are shoulders, elbows, wrists, knees. Tight skin on hands, rash on legs and other weird things (could that be due to age?) Do you think Hopkins will figure it out? Thanks for reading this massive first post!
  • Create New...