Please help me

Does ANYONE know of a doctor in USA that is knowledgeable about pernicious anemia? I've been to so many doctors. You just wouldn't believe how many don't know how to get me on the road to recovery. It's like they want to treat each symptom as though each has no connection. Will be grateful for helpful information. Thank You

[Volsfan918]

What part of the USA?

[Hidden in reply to Volsfan918]

Upper Midwest

[MoKayD]

I'm here on the east coast, mid-atlantic area. I'm not sure looking for a pernicious anemia specialist is worth your effort. I've had two GPs tell me that trying to figure out if I actually have pernicious anemia is usually a waste of time. Too many times tests come back with a false negative or positive. They both advised me to just resign myself to getting monthly B12 shots for the rest of my life. I've given up trying to figure out why my body doesn't process B12 properly because the shots have really worked for me. BTW, before starting my shots I saw a hematologist at Johns Hopkins (one of the best hospitals in the world) and he spent most of my appointment questioning me about my drinking habits. I think he thought I was an alcoholic.

[lynxis in reply to MoKayD]

🙄 Oh, how discouraging. I want to believe that somewhere there is a doc who wouldn't be like that but when you hear of getting treatment like that from a world-renowned facility, it is hard to sustain any hope. I can't tell you how many doctors have sent me home with a prescription for an antihistamine for anxiety when I came to them with cardiac/digestive/neurologic issues. Blah.

[B12life in reply to lynxis]

Instead try a Neurologist, Internal medicine, or get referrals from friends of docs that are more helpful in general.

[B12life in reply to MoKayD]

I have found in the US that unless a CBC is abnormal, avoid hemotologists. They did not recognize b12 deficiency as a problem and insist on oral b12 despite my levels being 1/3 my norm historically and I eat a lot of meat.

[lynxis]

Do you already know that you have PA and/or low B12, or are you trying to figure that out?

I have given up trying to find a doctor in the USA and accepted that I will be treating myself. Waiting on doctors to help me is the reason I got so bad in the first place. I was finally able to get a positive test for intrinsic factor antibodies, so I did officially get a diagnosis, but then many months went by struggling with them for proper treatment, during which time I continued to suffer/decline.

If you want to do lab testing, you can order your own labs through various lab services online. You can't bill insurance for them in my experience but you can at least get the tests you want. If you already know that you have PA, you can order your own B12 and self inject, like many of us do. But if you don't know your B12 status, serum B12 labs need to be done before you get any injections, because it is no longer useful after injections have started.

I am on this forum because the medical system in the USA could not adequately diagnose my PA in a timely fashion (took 1-1/2 years despite knowing my MMA was high and having a multitude of symptoms -- I was still dismissed over and over) and treat it (they insisted on once a month injections -- better than some places, but not nearly enough to give me my life back).

I hope someone has a good answer for you, as I would also be very interested in knowing if there is someone, somewhere in the USA who is good, but it is good to know that if it is PA, you can help yourself if you have to.

🙂❤️

[Hidden in reply to lynxis]

Yes, I have been diagnosed with PA and it's a shame here in the US we are ignored. Thank you so much for taking the time to share the information.

[lynxis in reply to Hidden]

You're welcome. I wish I had better news. I have struggled with whether to try and find a neurologist or a hematologist, but my experiences so far, and what I have read from people on this forum, have led me to believe that they have no help to give. So instead I SI almost every day, and I almost feel normal again. The Autoimmune Protocol diet has really helped me with my digestive issues and joint pain, along with taking Betaine HCl and eating/drinking lots of fermented things. Also helped by supplementing with folate, correcting my vitamin D deficiency, switching to Tirosint for hypothyroidism, drinking coconut water for electrolytes, and taking Calm (magnesium) for sleep. It's so much trial and error, and it can feel so isolating. Being here and asking questions and reading about other people's experiences has helped me to feel less alone.

[Hidden in reply to lynxis]

Lynxis my prayers go out to you. I recently found a guy on YouTube that has PA and was going through alot of symptoms I am experiencing. His memory was so bad it was hard for him to remember his brother's name. Here is his story but I am desperate at this point so I'm going to give his way a try. I put a link below. Don't know if it works but I've tried so so many doctors and specialist. At least this guy seems to know more than my GP.

Color

[lynxis in reply to Hidden]

Thanks for sharing that; I will check it out. Sending you all the best.

[Runner623 in reply to lynxis]

Hi! I’m in the Phoenix Arizona area. I’ve not found a GP or a Hematologists who can help… yet.

I have multiple sclerosis and when I had so much pain in my spine my neurologist advised me to ignore what the hematologists have said and find a Natural Path (ND) and get infusions of methylcobalamin or hydroxycobalamin. I already had an excellent ND and she sent me to a local college of natural medicine for infusions. Two times per week for 5 weeks. I was able to save my spine. I self inject.

My cornea specialist also advised me to ignore hematologists and continue with infusions and self injections. He said he has dozens of patients who have lost their vision from PA from the ignorance of medical doctors on this illness. Both my neurologist and ophthalmologist have known more PA than the 3 hematologists I’ve been to.

Please find yourself a good ND. Mine is doing research on the side to try to help. I have a research background so I’m digging into any idea that may help. My big question is why is the b12 I self inject or the infusions not getting into the cells. She has just advised me to start reading about methylation. I’ve just begun the research and have begun reading a book call Dirty Genes.

Sorry I don’t have much to offer. Like many of the people on this site, when I began getting b12 I improved drastically then crashed. I’m plateauing now and am frustrated.

I wish you the best in your quest to find health.

[MCappaPierce in reply to Runner623]

Are you talking about the differences between Methylcobalamin (free form) and cyanocobalamin (compounded form - which is the most commonly prescribed form of b12 injections)?

If so this article might interest you.

perniciousanemia.org/b12/fo...

Also if anyone knows where to get methylcobalamin as an injection - please share.

[Hidden]

Runner 653, thank you for the information. I appreciate it and I pray that ALL GOES WELL with you! ALL!

[Runner623]

25092. Runner 623 here. I forgot to tell you another book to read. Could it be B12? It’s excellent and also dips into methylation.

Read everything you can on microbiome (gut health). It goes hand-in-hand with methylation. It’s possible, poor gut health is keeping cells from absorbing the b12. It’s seems to all be tied up together but much of what I read is over my head. This site is excellent as I pick up on things someone says that I’ve read that fits into this puzzle I’m building. Good luck.

[Hidden]

🙂 Thank you! I certainly will read. Best!

[Readdaily]

I’m in New York and have been so fortunate to have a doctor who recognized my PA immediately and began treating me. She immediately started my loading doses on the very first visit after receiving my labs and once they were done, converted me to once a month injections. To give you an idea of how good she is, my symptoms started to return 2 weeks. I did not call her to tell her this because I figured, I’ll just wait another 2 weeks until it’s time for my regularly scheduled next injection. She called me about my labs for my thyroid and asked how I was feeling and I mentioned that some of my symptoms had returned, she immediately said “we need to increase your injections”, she called in the script to the pharmacy and started me on weekly injections. I couldn’t be happier with her. I only wish that all doctors were as knowledgeable and caring as she is. If there’s anything that I can do, please let me know. So sorry for your struggles.

[Runner623 in reply to Readdaily]

Readdaily ,

Thank you for the info. My ND sounds like your doctor.

I’m currently on 3 x per week at 2cc per injection. It’s still not keeping up. I’ve been experiencing mild on and off pain in my upper left quadrant for over a year. It would subside with injections. Two of the hematologists said it was gastritis. I saw my gastro and it wasn’t nor does it feel like gastritis. I’ve had it before.

My ND did an exam and it it 2 centimeters too large. She has put in an order for an ultra sound. Unfortunately, my insurance won’t cover it as she is an ND not an MD. I’m waiting to get into my GP. In the meantime, the pain is on than off and getting worse.

Thank you for letting me vent. I wish you a joyful day.

[Hidden]

Readdaily, thank so much. I'm in the Michigan area but just to have a doctor that is that knowledgeable about PA. I would definitely be willing to travel. I wonder if she does virtual visits? . Since PA diagnosis I have been to neurologist, endocrinologist, gastrologist just to name a few. Thank you for the information. Best!

[Readdaily in reply to Hidden]

I’m not sure about virtual visits, but if you don’t find someone in your area, it’s worth a try. I wish you all the best.

[Pain12345 in reply to Hidden]

I found a neurologist in Washington, DC who understands B12 deficiency and PA. Believes in aggressively treating B12 with front loading shots daily for a week and then tapering off. She even talked to me about self-injecting and wrote me a prescription. Not sure if she does virtual visits. If you want her name, let me know.

[siamesefrmsiam in reply to Pain12345]

I live right outside DC and would love to know the neurologist, if you’re willing to share with me. The neurologist I have in Maryland is not very useful.

[Hidden in reply to Pain12345]

I would very much appreciate her name and thank you soooo much.

[Pain12345 in reply to Hidden]

Rhanni Herzfeld

[Hidden in reply to Pain12345]

🙏 Thank you!

[siamesefrmsiam in reply to Pain12345]

Thank you!

[siamesefrmsiam]

“It's like they want to treat each symptom as though each has no connection.”

That’s exactly my experience, unfortunately. It took my family doctor to piece together my various symptoms as B12 deficiency, as every specialist I’ve seen is very focused on their area and not how it influences the whole system. I thought maybe hematologists would be most knowledgeable, but the first one I went to had to look up PA in a medical dictionary in front of me.

[Hidden in reply to siamesefrmsiam]

Wow... a doctor actually had to look it up...and in front of you! I'm so sorry siamesefrmsiam. It's so frustrating when you need help and and the right treatment.