Hello, I have PA. I believe that when I first started reading this board, I posted some of my medical history here. Some things have changed since then. 9 years ago, I had terrible pain in my right heel. I did some research and came to the conclusion that I might have a B12 deficiency. My regular internal medicine doc did the B12 blood test and said my B12 was low. He agreed to CYANOCOBALAMIN 1 injection a month and then I asked him to move it to 2x a month, since I wasn't getting any better. I also had extreme fatigue, but always thought it was from hypothyroidism (which was diagnosed probably 12-15 years ago). After looking into PA, I thought that I would be better off having regular Gastroenterology checkups. My main real reason for starting to go to a Gastroenterologist was because of severe bloating/distention in my abdominal area. I am 66 years old and look like I am 7-8 months pregnant! No one at the time (and I had been to around 6 different kinds of doctors; knew why my abdomen was so bloated.) Back to that bloating subject later. So during an upper scope about 4 years ago, they saw gastric ulcers. Finding that out, I had the Nurse Practitioner from my Gastro doctor's office verify my ideas about having PA & she ran the 2 necessary tests around 2 years ago. I guess that both came back positive. She wrote the script for CYANOCOBALAMIN B12 injections because I thought it would be better for her to handle them rather than my internal medicine doctor who I usually only see once a year. From the time to now, that I have been injecting B12, I sill have some pretty good fatigue going on, and at night, the bottom of my feet burn and toes do too. About a month ago, all of my joints have started hurting at night- so much that it wakes me just rolling over to the other side. I might add that I am also about 20 lbs overweight. Not terribly overweight, but overweight just the same. Fast forward to Dec 2018. Since no one up until this time (Dec 2018) ever knew why I was so bloated/distended; my Endocrinologist suggested I see an allergist/immunologist associated with University Hospitals in a larger city about an hour away for food allergies or sensitivities. He tested me on my back for 40-50 substances and didn't find anything. I am not even sure what exactly he tested me for. Since he found nothing, I didn't even ask. He did, however mention having a breath test done, and I had it done at a Cleveland Clinic hospital in Cleveland Ohio. I forget what type of breath test it was, but he ordered a 2 week round of xifaxim for SIBO or small intestine bacterial overgrowth. My bloating did not get any better, so he referred me to a Gastroenterologist at University Hospitals in Cleveland. That Gastroenterologist, after an office visit, said I most probably had leaky gut. He didn't want to see me again, because he said he is primarily a doc who looks for cancer in colons, and this wasn't his specialty. So in early spring of 2019, I decided to see a doctor at the Functional Medicine dept at the Cleveland Clinic. She is an MD. She says on her bio that she treats SIBO. So here I am currently seeing her, she has so far treated me with antimicrobial herbs, and my condition has not changed. So now she is trying xifaxin -I am due to start that next week. Xifaxin is $530 with insurance. I did find a patient assistance program that will give it to me, since my husband and I pretty much live on Social Security. This doctor also suggested that I try 0.1ML (2500 MCG Methylcobalamin injections 1x a week for 2 months to see if I feel better. I filled the RX at a compounding pharmacy in Cleveland last week. Price was $19 for a month supply.
I am writing all of this, for three reasons. 1) maybe someone has some of the same symptoms, and has some success stories for me that may help my treatment. 2). If someone here has some of the symptoms that I describe, and they do not know where to turn- my medical history may help them find the proper treatment, however my condition is till far from improved in the abdominal area- I always remain hopeful. 3.) I was told by my Functional Medicine doc at the Cleveland Clinic that there is a high chance that my sister has many of the same problems that I do. My sister drinks, so she sees doctors infrequently, because you have to level with them and she doesn't want to do that with her drinking. My sister is very tired all the time and I want her to start B12 injections to see if it helps. I fear she also has PA. She had her blood levels checked about 5 years ago and her doc who's not very good said she didn't need it. (we all have heard that!) I also am encouraging her to stop drinking. (she would have to go somewhere for help I think-she is that bad). I am unsure which type of B12 injections might be able to shipped to the US. I hope I can find some for her.
I am not a complainer or a person who dreams up all of these weird things to gain attention. During all of this time, I took are of my two grand daughters since 2011, ever since they were 2 months old and their mom went back to work. I did this 2x a week, for 9 hours a day (she works in a hospital and that was her shift). When they moved 4 years ago, I drove 40 minutes each way for 3 years so that I could be there for them and take the to preschool. They both are in school now. I now take care of my 96 year old mom who lives with us, and also work in my son's lab 1 day a week. So I am not a weirdo making all of this up. I am trying my best to live as close to a normal life as I can. I still am pretty tired (mostly in the evening, still have the horrible bloating, and still am 20 llbs overweight. My main goal is to get rid of the bloating and loose the weight.