Quote:
Originally Posted by AnnieB3
Nanc, Boy, do I have questions! 
First, you do NOT have to have B12 injections. You can take sublingual methylcobalamin daily, along with folic acid. HOWEVER, if your doctors have not tested you for the MTHFR mutation, they should. If you have it, depending upon if you have one or two copies and what gene, that will depend upon what you supplement with. It's a common mutation, and can affect what type of B12 you can absorb/use.
Are the B12 shots you're being given cyanocobalamin? If so, and you have the MTHFR, you might not be getting any B12 to your tissues right now!
Lupus waxes and wanes, as do the blood tests. FYI. Did a rheumatologist test you? Do you have copies of your labs?
You should find a dermatologist at a University. Make an appt. and discuss the rash. Develop a rash and get a biopsy. There is a lot they can tell by doing that! And they might want to do an immunofluorescent test to see if it is subcutaneous lupus. AND they might want to rerun the lupus tests. SCLE is not as easy to diagnose, that's why you need a dermatologist. Did they do the Anti-Ro antibody test?
Do you mean to say that you have a gynecologist who is also a urologist? They're two completely different specialties. I hope you don't have a gyno acting like a uro!! Not ethical.
Have you been evaluated by an endocrinologist? A low potassium would prompt me to see one. Or do you know why it's low?
Acupuncture is not the same situation as an injectable needle. At least research it. It might sound counterintuitive, but it helps to realign the abnormal nerve reaction.
I cannot stress enough that you need to have the MTHFR test. Have they tested your homocysteine or methylmalonic acid? Either or both can be increased if B12 is not making it to your tissues.
And since you are 47, you might be running low on stomach acid. It is thought that many allergies occur due to undigested food/proteins. The body doesn't recognize the proteins that aren't broken down and might see them as invaders. I haven't had any more since figuring out that I had no stomach acid for along time (I'm 55).
Undigested food basically rots in the large intestine, creating inflammation, etc. and can lead to a leaky gut, causing even more immune problems.
I suspect why, but why a low oxalate diet? Did they give a specific reason? Have you gotten kidney stones?
Sorry for the onslaught, but doctoring is about how you think about what's going on, and questions are very helpful.
I really hope you get more answers soon!
Annie |
Hi Annie -
I tried sublingial B and they gave me an instant bad headache. What I am doing now does not cause adverse reactions. I cannot take much in supplements, eetc due to allergies and IC. I do not know if my B12 are cyanocobalamin, I will have to check. I do not know what MTHFR is, I will have to look that up.
My PCP in an internal medicine doc, she does majority of my bloodwork, I will ask her about these things when I see her in a couple of weeks. I cannot remember if she or a rhumetologist did the lupus test. I haven't seen a rhum in quite a while...I will have to look back thru my records.
I do have a University dermatologist that I see every 6 months, and have talked to her about this rash many times. She says it is the hair folicles, which is a crock...if you saw it, you would know what I am talking about.
My dr is a urogynocologist. He runs the Female Pelvic Medicine Institute of VA...he is a fantastic dr!! I know they are two specialties, but a urogynocologist is what he is. He completed a dual residency in OB/GYN and family medicine and then did a three-year fellowship at Cleveland Clinic in urogynocology and pelvic reconstructive surgery. He has served as director, asst professor and associate program director at many university hospitals. Urogynocology is not an uncommon practice, and better when dealing with IC and PFD.
I have not seen an endocrinologist in many years, actually it was before I had my hysterectomy in 1996. I have malabsorbion issues, have for many years. My low d, b12 and potassium have been issue for many, many years.
I have researched acupuncture, believe me I have! It is split as far as RSD sufferers and how it has affected them. Many have had spread because of it, some have not. My mother-in-law is going thru accupuncture now and I see the bruises on her. There is no way in the world I could take that chance, it might not be the same as an injectable needle, but it is still a needle...lots of them. And right now, my RSD is so flared up and out of control, I just can't risk it.
Homocysteine or methylmalonic acid tested?? I don't know, doubt it. I will add all of this to the list for my PCP when I see her, and I will talk to her about the stomach acid...and the other tests you mentioned. Thank you for all this stuff to check on...I never would have thought of it all.
Why a low oxalate diet?? Urogyno said that he has found that that works best for IC patients. Said high oxaolate foods create these little crystals that are like daggers continuously stabbing the bladder lining - which is already inflammed and irritated. I have asked him sooooo many questions about both diets and he said that I need to follow them both and eliminate all the "avoid" foods and fiigure out what my triggers are. So hopefully I can add some stuff back.
I am so overwhelmed....whew! I will be happy when this SFEMG is over so I know more. And it looks like I will have a big ol list for my PCP! I am hesitant to jump and make appointments with all these other drs until I know more. I cannot drive any longer because of my RSD so my husband has to drive me everywhere and he works fulltime an hour away from home. I do not have family or friends here to help me out.
Anyway, thank you again for this info. I will research these things you mentioned that I have never heard of. This will help me when I see my PCP.
Nanc