Quote:
Originally Posted by AnnieB3
Nanc, Thanks for the answers! 
I hope this article helps to explain the MTHFR mutation. It's like having a kink in the biochemical pathway of B12. If you don't get the right sort of treatment, you continue to be B12 deficient.
http://mthfr.net/mthfr-c677t-mutatio...ol/2012/02/24/
The sun causing clogged pores? Time to find a better, more knowledgeable dermatologist AND rheumatologist. It seems that you have some sort of overriding "itis" and a cause should be found, as well as solutions (i.e., low oxalate diet).
BTW, They don't know what caused my reaction to the sun, but they thought it might be polymorphous light eruption. The only way to determine what it might be is to have a biopsy of the rash.
Do you have copies of the lupus labs? If not, get them and check to make sure Anti-Ro was done.
I have allergies, too, Nanc, but many supplements are free of most allergens. Was the sublingual B12 you tried methylcobalamin? Did you try a different brand (such as Jarrow)?
Please don't be overwhelmed! I'm sorry if I contributed to that. You have a lot going on, and I certainly know what that's like. Just take one thing at a time.
Did you go gluten free? If not, see if your doc can find someone (maybe ARUP labs) who still does the Reticulin antibody.
I'm really sorry you are so limited in what you can do. I totally get that. It's very frustrating to have a body that dictates your life! I hope you will get answers soon.
Annie |
Thanks for the link, I will look at it tomorrow when my vision will hopefully be a little better than it is at this moment.
I agree about the drs, but at the moment I am focusing on finding a new pain management dr and a neurologist. Good drs are so hard to find. I have had the rashes covering both arms for several years...hair follicles??? Come on!
I don't think I have a copy of lupus labs, I will have to look thru my records and ask my PCP if I don't.
You know, I cannot remember the sublingual B12 that I tried, been a while. I am super sensitive to pretty much everything I take, or try to take. This makes it a huge challenge for the drs trying to treat me...for anything. You should see the medication allergy list I carry with me...
I went 100% gluten free around 4-5 years ago. I was tested so many times for celiac. The last GI dr I saw was after I went GF, he said he couldn't do a biopsy at that point because I was already GF, and the biopsy is not 100% accurate anyway. My PCP and I decided to try it and it made a huge difference!
Don't worry, you have not overwhelmed me. You have given me a lot to think about and talk to my dr about. I just have moments when it all catches up to me and today was one of them...very high pain levels too!
It is hard for people to understand, but yes, I am limited...very limited in what I can do. Would like to try water therapy, but have that transportation issue.
Well, I need to try to sleep a bit.
Thanks for everything!
Nanc