Hi Fredd,
Thanks for your responses. She does indeed have other symptoms, which I have become hesitant to list with doctors, as it just seems to feed their insistence everything must be psychiatric as there are just too many of them. The hyperreflexia and high HCY, CRP are inconvenient for them in this regard so they tend to dismiss. Neurologists seem much more concerned about the resumption of seizures (something they can get a handle on and give meds for) than they do about the hyperreflexia, which they haven't been able to explain. Her severe anxiety so far has been totally unresponsive to a variety of SSRIs but the pdocs keep insisting that's because they haven't found the right one or the right dosage or whatever. I am skeptical and have become convinced that the doctors who pride themselves on strictly following evidence-based medicine claim success because anything that doesn't fit the paradigm of double blind controlled studies they outsource to the psychiatrists, who in turn can say there is nothing wrong with their approach it is just a matter of running through all the meds until they find one that works.
Symptoms include occasional angular chelitis, orthostatic hypotension, dizziness upon getting up, chronic nausea and vomiting (controlled by Zofran 2 X day), abdominal pain, poor position sense--on examination she can't tell if her toe is being pushed up or down--although vibratory sense appears to be intact, occasional numbness of body parts (eg hand, ear), severe anxiety, occasional nonpsychotic hallucinations, poor memory, shortness of breath, tender calves, vision deterioration, loss of concentration, arm and leg weakness with pain in the latter, occasional electric shocks, severe insomnia, constant fatigue, and I am sure I am forgetting others. On Sally Pocolochok's list, I came up with 25 to 26 points.
The resumption of seizures also seems suspicious--while in the past she occasionally had urinary incontinence with them, she is now getting fecal incontinence as well. She also sometimes has urinary incontinence that appears unrelated to seizures. Her brain MRI is clear, but a spinal MRI showed a cyst-like area extending from T3/T4 to T7 described as subarachnoid septations possibly indicative of previous infection. One neurologist said probably nothing, while another said perhaps a spinal fistula. I am wondering if subacute combined degeneration possible.
From the link you sent me, it definitely would appear that the acobalamin is called for in addition to the mcobolamin, particularly in light of the high CRP--perhaps the MMA result was affected by abx. Will ask new obliging doctor to re-run along with CRP. Will also look into the L-carnitine and definitely will do the fish oil. I haven't been able to read the link within the link you sent but will do so.
The link's discussion of deficiency vs. insufficiency was also of interest. It seems odd to me the doctors pay attention only to the latest absolute number to see if there is deficiency or not and ignore trends--B12 going from 880 to 575 to 450 over two years would seem to indicate something is going on that should be addressed--perhaps stores are being drawn down without replacement--but they just want to focus on the latest number. I am in a business where trend is considered as informative as (and often more informative than) an absolute number so I find this puzzling.
Once again, much thanks for your expertise.
