Raynauds.. new here.. questions.
Posted 18 February 2008 - 04:44 PM
First of all I want to start by saying I have never been diagnosed with Scleroderma... I actually have my first rheumatologist appoint in two weeks... I just have a few questions... I recently was diagnosed with Raynaud's ( I am 25 years old )... I was given calcium channel blockers to help with the discoloration and sensitivity.. it is not helping ( I stopped taking them ) my feet are sore, I can hardly stand to wear shoes all day... I have sores on my big and little toes, and the seem to be constantly numb... also the same week that I was diagnosed with Raynaud's, I broke out on my arms with what seems to be eczema ( I also never had that before ).... also my hands are red, swollen, and so dry that they crack and bleed, and finally there has been blood in my nose for the last month or so... oh and I am not sure if scleroderma is related to genetics at all, but my aunt had scleroderma.. I myself also had an autoimmune disease (Ulcerative Colitis ).. I had my colon removed 4 years ago because of that.. anyway my ANA blood test came back fine.. does anyone have any suggestions as to what kind of tests I should make the sure the rheumatologist does in two weeks? I feel like I am being a hypochondriac.. but my family doctor is blowing all the symptoms off as if they are nothing! anyway help would really be appreciated... thank you
Posted 19 February 2008 - 05:47 AM
Welcome, glad you found us! I too had ulcerative colitis, and then the raynaud's started. I've recently been diagnosed with Celiac, (gluten intolerance) so they can be related! The rash may be from celiac. Do a google on that too, see if your symptoms overlap. They say scleroderma is not genetic, but the autoimmune aspect does seem to run in families. Once you have one (ulcerative colitis) you seem to get more. I am not qualified about the tests to ask for, but you can search the medical guide on this site and I hope some of the medical people will answer you.
Don't talk to people who are negative, often family members are scared of the unknown and just want you to be ok, so the way they deal with it is to deny. I'd be glad to talk to you anytime, since our stories are so similar! Get good care, and do a lot of research, you are your own best advocate and researcher!
Posted 19 February 2008 - 05:57 AM
Welcome to the Sclero Forums, I'm so glad you've found us. We have so much information for you here. Look around the site and make yourself familiar with it. I'm really glad you are seeing a rheumatologist in a couple of weeks. As far as testings go, your rheumatologist will know just what to test. I will give you a link for the common medical tests used for sclero. In the mean time, I would suggest you go back on your meds for Raynard's, it sounds like you really need it. Keep those feet and hands warm!
Looking forward to hearing more about you and finding out how your appt. goes.
Posted 19 February 2008 - 11:28 AM
I am already on a gluten free diet.. ha.. I follow the specific carbohydrate diet, even without a colon my intestines seem to flare up!! Karen- Do you have a j-pouch, k-pouch, or do you have a bag? Thanks again for the replies!
Posted 19 February 2008 - 11:58 AM
What's the carbohydrate specific diet? I have a j-pouch, and have had it since 1995. Never had to have a bag, gladly. Take care,
Posted 19 February 2008 - 01:07 PM
Check out the book "breaking the vicious cycle" by elaine gotschall... that may better explain it than I can.. so far I haven't noticed much of a change.. but have only been on it about 4 weeks.. at this point I am trying whatever I can to feel better!!!....how do you deal with your j-pouch? any intestinal issues still?
Posted 19 February 2008 - 02:59 PM
My pouch is fine. It's not 100% great, but if I watch my diet, things are acceptable most of the time. I get up twice a night and have probably 6 BM's a day. If I eat too much, or something that disagrees with the pouch, I pay with frequency and urgency, but I'm pretty careful. The gluten free diet has done wonders for me in that department. It took about 3 months for me to really notice a difference on the diet. If I were you, I'd consider the sores on the feet to be the worst problem and try to get that under control ASAP>>>Good luck...
Posted 19 February 2008 - 04:28 PM
Welcome Darlin'. Sounds like you have gone through quite a bit already. I hope you don't get another diagnosis added to your plate. Sweet has given you a great link. Please take a look at it There is no one test or even 2 or 3 tests that are used to "diagnosis scleroderma". It is a very hard disease to diagnosis and most rheumatologist get there by looking at tests results and your symptoms. So one of the best things you can do is to write down all of your physical problems whether or not you think they are related. Take the list with you to the doctor and make sure he looks at it. Please talk to him about you Raynaud's. Sounds like you have it in your feet now which can be very uncomfortable as you already know. There are several treatments for Raynaud'sthat you might take a look at.
I noticed that you and have have been discussing the carbohydrate diet for IBD. I found this on about.com: Inflammatory Bowel Disease, The specific Carbohydrate Diet:
Is SCD Helpful for IBD?:
The short answer is maybe. Some people have found that the SCD is helpful for their IBD, but the diet can be difficult to follow. The SCD is not endorsed by either patient advocacy groups or professional medical societies. However, the Crohn's and Colitis Foundation of America does say that while the diet will not reduce inflammation, trying it should not be harmful.
I hope it's working for you.
Please let us know how your doctor appointment goes. I hope you get some answers.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)