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I've been seeing a chiropractor for my neck pain which has helped immensely. However I am moving to NYC and was wondering if anybody had any chiro recommendations. My old guy was really good, very cautious,etc. I have always been a bit skeptical about chiropractors and extremely cautious because of the POTS, so any NYC recommendations would be appreciated. Thanks!

Hi

Recently I've heard more and more about how B12 deficiencies cause/ exacerbate POTS symptoms. 4 years ago I had a slew of blood tests and my B12 levels were one of them - my level was 300. I've read a bit about this and it seems that this is definitely on the low end; however my doctor at the time said that it was all normal and back then I knew nothing about B12, so I nodded happily along. Now I am trying to get a B12 test and an intrinsic factor blocking antibodies test to test for pernicious anemia and it is a bit of a mess. The cardiologist says go for it, but they don't do that there so try the primary care dr. the primary care doctor isn't sure if they can do that because of some insurance nonsense. I've read about how B12 injections are amazing for people with POTS and while my B12 levels four years ago were technically within the "normal levels", it is just barely within normal levels.

I know this is rather longwinded, so my real question is, does anybody have any experience with B12 / pernicious anemia testing? Any tips on how to get your dr. to order this test and/ or give B12 shots?

Thanks.

Kiley,

I am so sorry to hear about your issues trying to get into the Neurology Department at Froedtert/Medical College of Wisconin, especially with a referral. This department was instrummental in diagnosing my autonomic neuropathy and sleep disorders, and I was just there today. I am so grateful for their expertise and compassion in helping me figure out my issues. Knowing the faculty and staff like I do, I wonder if there isn't more to the backstory that is standing in your way of getting an appointment. This may have nothing to do with you as a patient or your health issues, but as others suggested -- miscommunication at play. While working in healthcare for two decades I learned many lessons, which have helped me navigate multiple healthcare systems to further my own search for answers.

Professional courtesy prevents one doc from seeing another doc's patients within the same specialty, which I suspect may be part of the problem. Unless there is something in your medical records that suggest otherwise. It wasn't until I maintained copies of my records, brought and referred to them during every appointment, and pointed out every error and inconsistency that I was able to clear up several "assumptions", which I felt were damaging my plight of finding docs who could help me. Once I got the "right" signs (which are objective things medical staff can see) verses symptoms (which I reported) documentated in my medical record, things got rolling. If your record includes sufficient objective medical documentation, this should stand for itself. If your medical record doesn't include signs of POTS, record your BP/HR for several days and fax them to your GP/Cardiologist, which should lead to orthostatics performed in the office. Your documented elevated HR should open doors.

I have a few thoughts that may help you get an appointment. 1) Maybe one of the Neurology nurses would take your call/call you back. Offer to fax any previous testing and explain your situation. 2) If they can't help you, ask for the name of a GI doc who works with POTS patients, then get a referral from your GP/cardiologist. 3) Try to make an appointment with the NP with your referral from your Cardiologist/GP. 4) Have your cardiologist order your autonomic testing at Froedtert. My endo ordered my testing, and my positive TTT/Valsalva/TST/QSART lead to my appointment with Barboi. 5) Get a referral to another specialist at Froedtert. Your Cardiologist could refer you to Marcie Berger, Director of the EP lab, who works closely with the Neuro department.

Best wishes getting an appointment.

Hi

I just saw this topic - I hope it isn't too late to respond. I'm in Milwaukee and I see both Dr. Barboi and Dr. Cooley (he is a cardiologist). I don't know if you want a neurologist for a particular reason, but my advice would be GO SEE DR. COOLEY! He is really great for POTS - he knows a whole lot and he told me pretty much exactly what Dr. Grub said. I like Dr. Barboi a lot also, but he hasn't done as much as Dr. Cooley.

I wouldn't see Dr. Berger. I actually saw her first when I had POTS and she misdiagnosed me and then kept telling me that the meds she had prescribed were working even though they weren't. After a few months of that I found Dr. Cooley through a lucky coincidence and I switched to him and he's been great.