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Member Since 01 Aug 2013
Offline Last Active Sep 26 2013 05:52 PM

Posts I've Made

In Topic: Neurologist Vs Gastroenterologist

26 September 2013 - 09:09 AM

Okay, so I finally got my hands on the actual labs, and the flagged results are:

MCH (H):  32.1 pg (ref 27.0-31.0)

Monocytes: (L): 3.2% (ref 5.0-10.0)

Absolute Lymphocytes (L): 0.97 K/ul (ref 1.00-4.80)

Absolute Monocytes (L): 0.12 K/ul (ref 0.16-1.00)
Iron (L): 46 ug/dL (ref 50-170)

Total Iron Binding (L): 247 ug/dL (ref 250-400)

INR Value (L): 1.06 (ref 2.0-3.0)

Rheumatoid factor (H): 26 IU/ml (ref <14)

Vitamin D (L): 25 ng/mL (ref 32-100)


Does anyone have any insight on these? No one discussed the high RF result with me, but it's a GI office so maybe they didn't think it was a priority?

In Topic: Neurologist Vs Gastroenterologist

24 September 2013 - 08:52 AM

I met with my neurologist for a follow-up and had a very frustrating visit. He went over the notes from the neurosurgeon and, after basically accusing me of lying because he had written information down incorrectly, said that the surgeon didn't think I have trigeminal neuralgia, but rather some for of atypical facial pain or migraine disorder. Which is not what the surgeon told me - like I wrote above, he said it was the atypical presentation of TN. The neurologist also said there wasn't anything else that could be done besides medication, which I've since learned isn't actually true, but since I didn't want to keep trying new meds (I've been through three with a fourth sitting in my bathroom unopened), we agreed I'd just come back in a year for my refill appointment. This doctor came highly recommended, but it's clearly not a good fit. In an odd coincidence, the nurse practitioner at my GI's office actually told me she'd fired this same neurosurgeon because of the way he treated her mother after a stroke.  

In Topic: Neurologist Vs Gastroenterologist

30 August 2013 - 11:06 AM

The nurse called with my lab results today and said everything was normal, although when I asked her to give me more specifics, she said I had some abnormalities in my monocyte and lymphocyte results but "nothing to be concerned about." My celiac panel was negative, which either means I've been doing really well with my diet or was misdiagnosed in the first place. B12 normal, iron and vitamin D on the low side of normal.


At least I know that ongoing celiac damage isn't the cause of my trigeminal neuralgia, which was my initial goal. I feel like I've found some worms under these rocks, though.

In Topic: Neurologist Vs Gastroenterologist

28 August 2013 - 08:50 AM

Well, I saw the neurosurgeon today and, like my GI, he also said he wasn't aware of any connection between celiac disease and trigeminal neuralgia. He more clearly defined mine as the atypical form, which means it doesn't respond well to medication but is also a bad candidate for surgery. I pulled out the University of Chicago's description of celiac-related neuropathy, which includes one-sided facial/head pain, but he felt that was a totally separate entity. I need to do some serious medical literature digging to find some information that will inform both of these doctors that there is a known relationship between TN and celiac disease, at least in that the rates of each are higher in patients with the other. 

In Topic: Neurologist Vs Gastroenterologist

27 August 2013 - 06:57 AM

But can I trust my initial diagnosis? I didn't have a blood draw at the time - I changed jobs and temporarily lost insurance right after my endoscopy/biopsy. At this last visit, the nurse practitioner said my chart showed eosinophilic esophagitis, and that got her saying there could be other non-celiac causes. She wasn't clear on whether that could mean "in addition to" or "in lieu of" celiac disease and I feel like I need a more definite answer if the biopsy wasn't actually conclusive. I brought up the idea of genetic testing (in part because my son is short-statured) and neither she nor the GI had much knowledge about it. 

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