I see a fantastic rheumatologist who is a renowned Lupus researcher, Dr. Murray Urowitz, at the Toronto Western Hospital.
Toronto's a bit far (5 hours), but I may be willing to spring it. Have you heard of the Rebecca MacDonald Centre at Mount Sinai Hospital? Apparently they have some good doctors there: http://www.mountsinai.on.ca/care/rmcad/rebecca-macdonald-centre-for-arthritis-and-autoimmune-disease
I've just been suffering for a long time with no answers (badly since 2006). Have tested positive on ANA recently w/ two patterns and have had all kinds of crazy and scary symptoms (I've to begged for the ANA for two years and finally got one).
I'm not sure I'll be able to get the help I need where I am and have encountered a lot of resistance in getting a referral to a rheumatologist / allergist / immunologist.
I wish I could just walk into a hospital that specializes in Autoimmune Disorders, I'm so afraid that they (doctors) will wait until it's too late.
oona, I didn't know Mt. Sinai had a centre. I've been a patient of that hospital for many years due to gastrointestinal issues. Here is some info on Dr. Urowitz:
http://www.uhnresearch.ca/researchers/profile.php?lookup=6193. I hope you can get a referral somewhwere.
thanks TrudieC, just talking with someone right now helps a lot. i have been having a lot of gastro issues over the last 4 years, too. no dx yet. all of this is so frustrating.
What province do you live in? City? There is a list of Drs.College of physicians and surgeons. Your family DR. could refer you to a rhumatoligist.I can't beleive you have not even got a referal to a good gastrointeroloigist. Sorry about my spelling. Lupus(SLE) and hep c have put alot of brain fog on me today. I have an idea for you though. Go to the emergency when you are having a bad day and ask for a referral while you are there. Hope it helps. I see my rhumy. Dr. Fi Fi Mah Good dr.
i have a referral to a GI from emerg. You have Hep C and Lupus? I would be interested in talking with about that! I've tested positive on Hep C antibodies and we're trying to figure out if I have that (too) or not! I tested positive when I was 17 years old, and when I was 27 decided to see a liver specialist about it. well, he did more thorough testing (HCV RNA) and told me matter of fact that there was no trace of the virus in my system and why was i wasting his time.
i just retraced my steps, got the actual reports last week and I have them with me now (that was two years ago). I was so shocked that I just left the dr's office at the time crying with joy, but I'm still weary about saying for sure that i don't have it.
i would love to chat with you ivgirl!
forgot to mention that i live in ontario.
there are various forms of hep sounds like you had what is called acute and the body usually clears it on its own.Lucky you. Recently i heard that Candida a bacteria present in our bodies but can be depleted from antibiotics etc can lead to lupus and leaky gut syndrome all kinds of things. I think I am going to look into further as I have many GI problems. They say a good pro biotic and no sugar they also suggest colon cleanses. I am at my wits end i am willing to try anything besides it would probably be good to avoid sugar and get some healthy bacteria in us.Ontario has a good lupus site i saw. Hope you find this in good spirits and are feeling fine iv
hey thanks, i'll check out google for that ontario lupus site, hope you're feeling ok, too!
i was diagnosed with chronic hep c and then told ten years later that i didn't have it, at the time i decided i would go for treatment because i was having really crazy bad symptoms, i thought it was from the hep.
i think there's definitely something to the candida theory, i would definitely try that approach. i have used lactobacillus acidophilus HMF super powder (pretty pricy but worth it, though i think it has fake sugar in it?) and it has worked for me in the past (2006 i used it after a bad batch of antibiotics with really graphic results, it helped a lot).
my gi problems are pretty bad right now, can't keep anything in for long enough and have lost about 15 pounds since the beginning of october. i'm about 100 lbs now, which ***** when you're trying to fight off illness.
I am so sad to hear that you are not well right now. I am going to get some probiotics too.That happened to me too i lost so much weight 100 lbs for me I think it was stress. But that sounds serious sweetie, Try to get a copy of all the lab work etc they do so when you finally find a good dr you have all the info.Try not to be too afraid the weight thing could be just because you are so worried stress does terrible things to us.I will keep you in my prayers Love and light iv
wow 100 lbs! that's a lot of weight. stress is tricky. i've been doing my best to try and stay calm through all of this. i think it's essential to our health. probiotics are usually a good thing. i would look for one without any added sugars or sweetners. i am trying my best to get as many copies of things as possible. there will be some gaps though and spotty info from 2002 on. i'm doing what i can. i really hope you feel better soon and for a long time! i believe we'll both be able to find the right balance. i'm sure there are those who are, or have been, worse off than us and they've recovered! we just have to keep that in mind :)
\sorry typo only 10 lbs for me but when one only weighs about 110 to begin with....because of the lupus they put me on prednisone so I gained it back and then some now I am loosing it again but like you many gi problems i am going to get some of the good probiotics are so right there are always people who are worse off than us we do need to be greatful for everything we have. Hope you are feeling fine best to you Ivy