New to the group and new possible Chiari I diagnosis

Welcome Greetings and Introductions
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I've had symptoms for almost three years with no answers. Before that I was a happy and healthy long distance runner. It started with stroke like symptoms and then progressed to cardiac arrhythmia/palpitations, fatigue, brain fog and loss of balance coordination. I also have had ongoing massive head pressure, painful pressure at the base of my skull, headaches, pain in my neck and nerves along the sides and pain in my shoulders. I have muscle weakness and strained vision sometimes double and pain behind my eyes. My balance became so impaired that I started falling into walls when I would walk and I also fall over when I lean down. Leaning down makes me feel like the ground quickly falls out from under me.

I had a brain MRI in Dec. 2011 because my doctor at the time thought I might have a brain tumor. I was told the scan was completely normal. But as symptoms persisted, I had another in Jan. 2013. My general practitioner told me everything was normal other than some disc desiccation in the cervical spine (I also had an MRI of that area due to the neck pain.) Funny thing is that I asked for the report last week and when she sent it to me via email, the radiologist had said that my brain showed 4-5 mm low lying cerebellar tonsils which "are consistent with Chiari I Malformation. Evaluation is advised."

Why would my doctor not have told me that?! Not that you all can answer that question for me (or her) but i'm feeling frustrated. I understand it being insignificant if it was an incidental finding, but I'M SYMPTOMATIC.

I've been seeing doctors for my condition for almost 3 years now. Needless to say, thousands of dollars in medical/insurance bills and precious time later, I don't have a lot of faith in doctors. Because I live in Hawaii and there are no Chiari specialists on the islands, I have contacted a Chiari neurologist in Seattle and sent in my MRI and records along with symptoms. But I'm not confident given my track record with doctors that he'll be able to help me. :-( According to his office, he'll only evaluate patients he believes are potentially surgical candidates and his criteria sounds like it's 5 mm and mine just said 4-5mm.

I was told back in February after testing that I was positive for Lyme Disease. I'm undergoing treatment for that which is controversial unfortunately. I'm not getting better yet. I'm just so frustrated all around. I don't even know what this is or what to do. If it's Lyme or if it's Chiari or both or something else. I also have an MTHFR mutation so I'm deficient in folic acid and B vitamins.

I apologize in advance if this comes across as a "vent." I'm just feeling helpless. But I'm happy to have found this group.

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Thanks so much, Mandy! I really appreciate your positive and uplifting reply. :-) So far, supplementation for the MTHFR gene mutation hasn't helped much. But maybe I just need to give it time. I've only been supplementing for about a month.

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Oh I also forgot to add that I was recently given a "probable" diagnosis of POTS because my blood pressure is all out of whack and I nearly faint on a fairly regular basis. This is so crazy. I was healthy before all this started and now i'm getting all these medical terms thrown at me!

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Yes, the POTS is scary. Oh my goodness Abby, I can almost say YES to all the things you listed. (sad face). I have major problems with my heart but my echo is normal. If I exercise though, I get extra beats. I also have missed beats when at rest. It's usually my BP dropping quickly so my heart starts racing to get it back up. It's very, very scary and uncomfortable. I have problems with anxiety because of all my symptoms. I have a two year old son and husband who need me the way I used to be. And yes, I was going through some of these symptoms while pregnant, so I was written off as crazy and just pregnant!

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That was a very helpful explanation! Is this commonly related to Chiaria Malformations or is it hard to say?

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The MTHR test can be performed by any lab. But they are only looking at the two most common genes. But make sure your doctor gives the proper diagnosis codes for getting the test. Mine didn’t for some reason and now I’m slapped with the $300 bill (I need to call him about that.)

Getting the proper supplementation is a good question. I’m on methytetrahydrafolate (the already broken down version of folic acid) and on Methylcobalamin. But I’m being told conflicting things on if this is the proper supplementation. One
Doctor says yes while the other days no. I think this implies that much is still misunderstood about the methylation cycle and folate/b12 deficiencies. But these deficiencies have been connected to Chiari as they play a huge role in neurological function. I’ve obviously been
Deficient my whole 29 years of life without knowing it.