Oh my goodness Carla, that was an AMAZING article! It's so nice to read something that really puts this massive confusion we all feel in to layman's terms. I've forwarded it on to a bunch of my family members.
Thanks so much for sharing! :)
Carla Ulbrich said:
sounds like you are being wise- so glad to hear you got some deep rest.
Naturopaths can be great. I've had wonderful results from eliminating gluten and dairy. here's an interesting article about "how to stop attacking yourself" (about autoimmune disease, and clearing it up naturally) by Dr. Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-y...
momma2mm said:
I can't thank you enough for your replies! My rheumy is supposed to call today after reviewing the skin biopsy results from the dermatologist (which the conclusion was concurrent with Lupus).
I literally slept this entire weekend. I NEVER sleep this much. I think it's just pure exhaustion from poking and prodding and emotions. I do have an appointment scheduled with my PCP this week so that I can go over all of these results with her and see what the next step is.
I also have decided to meet with a Naturopath. (My Mom's). I figured at this stage, what do I have to lose? I'm already tired of the medicines, tired of the specialists and the him hawing around a dx.
It's SOO nice to know I'm not alone in these feelings.
yeah he's a revolutionary. Glad you enjoyed and shared!
momma2mm said:
Oh my goodness Carla, that was an AMAZING article! It's so nice to read something that really puts this massive confusion we all feel in to layman's terms. I've forwarded it on to a bunch of my family members.
Thanks so much for sharing! :)
Carla Ulbrich said:
sounds like you are being wise- so glad to hear you got some deep rest.
Naturopaths can be great. I've had wonderful results from eliminating gluten and dairy. here's an interesting article about "how to stop attacking yourself" (about autoimmune disease, and clearing it up naturally) by Dr. Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-y...
momma2mm said:
I can't thank you enough for your replies! My rheumy is supposed to call today after reviewing the skin biopsy results from the dermatologist (which the conclusion was concurrent with Lupus).
I literally slept this entire weekend. I NEVER sleep this much. I think it's just pure exhaustion from poking and prodding and emotions. I do have an appointment scheduled with my PCP this week so that I can go over all of these results with her and see what the next step is.
I also have decided to meet with a Naturopath. (My Mom's). I figured at this stage, what do I have to lose? I'm already tired of the medicines, tired of the specialists and the him hawing around a dx.
It's SOO nice to know I'm not alone in these feelings.
I don’t know if this helps but a onogolgist told me not to worry about it they treat all autoimmune the same I don’t know if that’s true but it help me. I swear if you put all those drs in a room they would never agree and all think they were right ;). Take care of yourself hugs. vicky
I tried to comment on your blog site, however can't seem to get a Google acct working. One thing I did want to mention is that 1% of lupus patients are ANA negative. And while this means most can use a +ANA as an indicator there is a slim possibility patients may not have a positive ANA. I happen to be one of the 1%. My Rheumy went to UC Irvine which is a lupus referral center and taught there specializing in lupus as well. She also practiced at the Mayo clinic and in all of her years working with lupus patients I am her first and only ANA neg patient.
We kept thinking that after we got my last flare somewhat under control I might show positive, but alas not to be. I was diagnosed only after a kidney biopsy, which showed class III & IV and stage 4 Nephritis. It has also affected my CNS and caused 2 TIA's and a stroke all by the age of 44.
The good news...with the right diagnosis and meds I can now remember my name, have a coherent conversation, stay awake during a conversation, and other things that I didn't even realize I wasn't even aware were a problem.
Thanks for taking the time to write the blog which is very informative.
DeAnne
Carla Ulbrich said:
Please don't suddenly stop taking meds, ever. If you stop a med, wean off it slowly, because you will otherwise probably have horrible withdrawals and get very sick. I have seen it happen.
The rash is not a "requirement." and neither is a positive ANA test (the other reason some doctors say "you don't have lupus.") Some doctors just don't like to give out a lupus diagnosis. I'm hearing that more and more over the last couple years. I wish I knew why. How can you move on and tackle your issue if no one will pin it down for you?
It happens so much to people, leaving them bewildered and doubting themselves, and not knowing what to do. It makes me mad, actually, to see patients getting the runaround like this. It's like the doctors either don't know or are ignoring the basic guidelines for diagnosing lupus (having 4 or more of the 11 classic symptoms). Here is a blog post I wrote about people getting "undiagnosed" with lupus and"rediagnosed" with something else, like Sjogrens or MCTD http://www.lupusandhumor.blogspot.com/2011/09/sjogrens-vs-lupus-sma...